Author: Rundy

I think it is a common misconception of people not familiar with Alzheimer’s’s that the disease affects all parts of the mind (or memory) equally. Thus when people see an Alzheimer’s’s patient acting incompetent at one moment the assume the person is incompetent to that degree always and in all things.

I’ve already mentioned before how Grandpa has his good days and his bad days, so on one day he might seem a complete basket-case and the next day he might seem almost normal. But not only does he have good days and bad days, but even overall the disease affects different parts of his mind to different degrees. It is amazing (and perhaps bizarre) the juxtaposition between what he remembers and what he doesn’t. Grandpa is the one suffering from Alzheimer’s’s, but there are still some things he remember’s better than Grandma.

One thing he seems to be able to remember very well is old movie’s that he has seen. Some weeks ago Grandma was watching The Yearling and Grandpa decided he would go to bed. As I was putting him to bed he was telling me about how the first time when he had watched it he had thought it was pretty good but that over the years it had begun to strike him as childish.

Grandma has difficulty remembering what she has watched a long time ago. Late Saturday evening Grandma was flipping through channels looking for something to watch. She hollers out, “‘Grapes of Wrath’ is on. Is it any good?”

“I’ve read the book, Grandma,” I said from where I sat in front of my computer. “I haven’t seen the movie.”

“Was the book any good?” She says.

“It was worth reading once,” I said. “I don’t know as it would make a good movie.”

“I’ve seen it before,” Grandpa said. (The movie was some old black and white . . . I don’t know if there is some more recent version, but I’m sure Grandpa saw this years ago.)

“It’s rated three and a half stars,” Grandma said. “You want to watch it again?”

“No, not particularly. I’ve seen it enough times.”

So Grandma switched the channel and came to some movie made in 1991 that was called “Fried Green Tomatoes.”

“We’ve already seen that, too,” Grandpa said.

“Well, I don’t remember it,” Grandma said. Sometimes I think Grandma doesn’t believe that Grandpa actually does remember and has something of the opinion that “If I don’t remember it then surely you must be imagining that you do.”

Anyhow, she watched Fried Green Tomatoes and halfway through the movie she finally remembered that she had seen it before. I don’t know where what movies you have watched is stored in your mind, but it seems that part of Grandpa’s mind is still working better than Grandma’s.

****

Two little slice-of-life moments:

Saturday evening the sun had gone down and it was dark. Grandpa walked into our bedroom and saw I had left the blinds up so he proceeded to try and put them down. My hint that he was trying to do this was when, while working in the kitchen, I heard the sound of my bed springs squeaking and Grandpa climbed on my bed. I went into the bedroom and found Grandpa wrestling with the window latch.

“What are you trying to do?” I asked.

“Shut this window,” he said.

“Here, let me help,” I said. I took the pull cord and dropped the blinds.

“How did you do that?” Grandpa asked.

“I unlocked it up there by pulling the string.”

“Oh. Now shut the other window.”

“What?” I said.

“You shut that one,” he pointed at the window. “Now shut the other window,” he said, pointing at the back of my bed. My bed has a somewhat ornate white metal backing on it then runs along the wall.

“That’s not a window,” I said.

“It’s not?” Grandpa said.

“Nope,” I said. “I shut the one window. I can’t shut that because it isn’t a window.”

“Well, okay, if you say so,” Grandpa said.

I started to leave the room, but at this point Grandpa’s mind must have dropped back into gear because as he followed after me he laughed and said, “Next thing you know I’ll be having you tear up the sidewalk.” Which I took as his way of acknowledging that he had just asked me to do the pointless and impossible.

Grandpa’s mis-seeing of things is an interesting phenomena. People are inclined to think he is hallucinating, or, back in the day, that such a person was plain out of his mind. Certainly it can appear that way–Grandpa will talk to the empty couch, or think Grandma isn’t sitting in her chair when she is right in front of him. But I don’t think Grandpa hallucinate in the most strict sense. If you’ve ever read about how our mind handles the input from our eyes you know that our minds must interpret what our eyes are seeing. Perhaps you’ve occasionally seen something from a great distance or at an odd angle and you were sure that it was something only to discover as you drew closer that it was nothing of the sort. Or, as another example, you might see some small black thing on the floor and it is a spider and you scream and jump–it was a spider in that moment–only for you to take a second look and realize it is a bit of lint. Now imagine that the part of your brain which interprets what you see is damaged and it is a hundred times more difficult to inter-pert what you’re seeing. Then you’ll start thinking that a pillow and a blanket on the couch is someone sitting there.

This mis-interpreting of visual cues is not the only source of Grandpa’s seeming hallucinatory actions. Sometimes Grandpa’s thoughts or memories leak out into the present so that he might be thinking about someone and that thought slips through into the category of present reality and he might think the person is there, or he remembers some time earlier in the day.

In the case of the “two windows” incident I think Grandpa saw the back of the bed where the cross bars from a “window” shape and it struck him like a window. Thus in that instant it became another window to close.

A little later that evening Grandpa decided he needed to straighten out Grandma’s chair while she was sleeping in it. I tried to dissuade him from it because Grandma absolutely hates to be disturbed while she is napping, and she was exhausted from going out shopping with Daryl that afternoon. However, even though he admitted it wasn’t a good idea to wake Grandma, somehow he had the urge to mess with the stuff of Grandma’s chair. He finally settled on the need to find something to weigh her blanket down with, and so started out be using his cane and then began to hunt around in the table beside the chair for some more heavy objects. I decided to not contest him too vigorously since it was nearly supper anyhow and Grandma would need to wake up soon anyhow. Grandpa was thwarted in his search for a properly heavy object to weigh down the blanket so he settled for using the TV remote, the cordless phone, and a Reader’s Digest along with his cane. He was about to move on to more activities with the chair but I suggested that he might have done enough.

I think he sensed my hint that he should stop. He paused and then said, “Well, I guess then I’m going to take a nap.”

****

Grandpa isn’t stupid. If some stranger saw him thinking the bed was a second window, or carting various objects over to weigh down the blanket around Grandma, or forgetting how to use the bathroom they might think him a driveling idiot incapable of any reasonable thought. But Grandpa does remember things, and he can think about things, and more than just all the old movies that he has watched.

I think part of the problem in some people’s thinking is that the saying of the “second childhood” is literally true. That is, you regress just as you grew up so that by the time you’re struggling to remember how to use the bathroom your mental functioning has obviously be reduced–across the board–to the level of a toddler who struggles to understand how to use the bathroom.

But that isn’t how it works. Grandpa can have the perspective of an adult from one perspective, and from another he can be reduced to the competence of a toddler. It can seem hard to believe that at one moment Grandpa can be talking to his brother Doug about world events and then go into the bathroom and not remember how to take a leak–but it is true. He doesn’t lose everything in a slow gradually decline–it’s like his mind is a puzzle and pieces keep falling out leaving black holes in the middle. Some places are clear, some places are now muddled, and some places are lost entirely.

Grandma has a tendency to treat Grandpa like a child, or at least shall we say in a demeaning manner. But while Grandpa doesn’t understand many things, and often loses his words, he still can pick up the attitude of people (and which is why Grandma’s attitude makes him hostile, though often he can’t adequately express his irritation). And also, he can sometimes pick up the subtler points in a conversation even if he can’t communicate clearly himself.

For example, I have a cousin who has just started going to college. He just finished his first semester and he flunked it. Grandma was talking about this with various people, and Grandpa was made aware of the fact. That was some days ago. You might think such information would have slipped from Grandpa’s mind, but no . . . that cousin stopped by Saturday after supper and Grandpa started to grill him about how he was doing at college. My cousin promptly started to spin the situation. I don’t know if he was outright lying (I don’t know anything first hand about the situation) but he was definitely trying to blow Grandpa off with the impression that everything was just fine. After all that all you need to give an ignorant old man, right?

Grandpa was having a hard enough time getting his mouth to work right, so he finally ended with an admonition to study hard and do a good job. But later he privately expressed disgust to me that my cousin would say, “Everything is fine, everything is great,” when, as Grandpa said, “That isn’t true at all.”

So be careful how little you think that Alzheimer’s’s patient doesn’t understand. Just because he can’t remember how to put his pants on doesn’t mean he has totally lost his mind. He can still understand more than you might think.

Grandpa is definitely becoming more accustomed to me tending to his needs. It has taken months, both for him to get comfortable with me and for the reality to sink into his brain. He still always wants to know where Grandma is, and what she is doing, but now for many (and perhaps for most) things where he needs help he looks for me to assist him. A few nights ago, after I put him to bed, he peed in our bedroom garbage can. When he came to the bedroom door with one of my shirts twisted around him he didn’t call for Grandma–he said “Yoo-hoo!” and motioned for me to come. Before if he had any kind of trouble it was always Grandma he called for, and I simply had to answer the call instead.

Anyhow, that isn’t related to the point of today’s writing except as it is tangently related to bathroom issues. More directly related, Grandpa had further problems last night.

I can’t say I know all that goes on with Grandpa during the night because I only wake up when I wake up. In a normal healthy life I am a light sleeper and usually wake up for any going-ons. When driven to utter exhuastion, and faced with activity constantly every night, I think my mind has begun to ignore or partly shut out some things. Which is not to say I sleep through the night–far from it, I still wake up multipule times every night for Grandpa’s activity. But now there are times when I wake up and Grandpa is already absent from the room, and how am I to know if there are other times when he comes and goes entirely without my notice? This troubles me, but there is little I can humanely do about it. I still wake up instantly to any loud crashes, and I hope that will be good enough.

In the regular activity of Grandpa’s trips to the bathroom during the night I must constantly make sleep-befogged decisions about whether he is going to make it all right by himself, and whether I should go investigate. The dutiful part of me says I should get up and follow him out of the bedroom every time Grandpa takes a midnight venture. This sense of duty runs headlong into the harsh reality of being utterly tired in the middle of the night and getting up five times if you don’t absoloutely have to, is something you try to avoid. I put a sauve on my conscience (and perhaps decieve myself that it is sufficent) by trying to listen very carefully as I lay in bed to see if he makes it to the bathroom. If I hear the proper number of scuff scuff to indicate Grandpa has walked the proper distance down the hall, and then the slap slap of his bare feet on the linolem of the bathroom floor, then the flick of the light switch and then the click of the door I figure he made it all right, and isn’t going to take a leak in the hall coat closet. If I were a very good boy I would get up and stand by the bathroom door until he was ready to get out. If I was simply a good boy I would lie awake in bed until I heard him get out of the bathroom and return to bed. As it is I usally roll over, hope he does everything all right, and then drift back to sleep. I’m not pleased with this, and suspect this type of reaction will eventually come back to haunt me, but in the middle of the night you sleeply think, “What is the worst that could happen?” And then you think that the worst thing you imagined won’t happen tonight, so just tonight you don’t need to get up.

With that said, if I get any inkling of something amiss, I do get up. I just don’t get up before something does seem amiss, and that is the sore point.

Last night I woke up to find Grandpa returning from the bathroom. Nothing odd there. Once he was too his bed I rolled over and tried to go back to sleep. About ten minutes later as I was dozing off, Grandpa got up again. A good night is when Grandpa returns promptly from every trip to the bathroom and gets back into bed and falls asleep promptly. A bad night is when a bathroom trip turns into a complete derailed procedure, when it can take anywhere from fifteen minutes to an hour to get Grandpa settled back down. A second time out of bed made me thing “Oh boy, this is not shaping up good,” but wasn’t enough for me to go after him. Maybe the first time he had got to the bathroom and then forgot to actually use the bathroom so he had to go back now. But my sense that all was not right with Grandpa’s world had been perked, and I didn’t promptly fall back to sleep.

I lay in a restless dozing state, noting with growing concern that this second trip out to the bathroom was growing rather long. Finally I dragged myself to full wakefulness and decided I had better brace myself and go check on the scene in the bathroom. I reached the bedroom door just and Grandpa was returning. He didn’t seem agitated, so I made sure he got back into bed, and then I went back to bed as well. But Grandpa was restless, tossing and turning, and finally setting up in bed. Ten minutes later he got up. I asked him what was wrong, and he muttered “I better go back to the bathroom and get it unstuck before someone else tries to use it.”

That is the unmistakable sign of needed intervention. Just because Grandpa says the toilet is plugged doesn’t mean that it is . . . but it does mean he thinks there is an issue (which must be addressed) and if he thinks he is going to tend the problem, you’d better get there first. So I scrambled out of bed and squeezed past him in the hall to get into the bathroom first.

I seeing the state of the bathroom I surmized that Grandpa’s previous long absence during the last trip was because he imagined there was something wrong with the toilet and had tried to fix it . . . somewhere along the line dumping the contents of the bathroom garbage can into the toilet. Sensing that his efforts had not resolved anything, Grandpa had decided to leave the problem for the time being and come back in the morning. Thus he had headed back to bed, and I had met him at the bedroom doorway. On lying down he had begun to think about the matter and had become uneasy with the idea of leaving the non-functioning toliet for someone else to attempt to use. So he got back up to take another stab at “fixing” the problem. Thankfully I was there this time.

There was enough toilet paper in the toilet to jamm everything up nice and good if he tried to flush it all down. However, he had dumped the garbage can contents on the edge of the bowl so I was able to take the toilet brush and scoop the lager portion of the toilet paper contents back into the garbage can and flush the rest away. I flushed the toilet twice to prove to Grandpa that everything was working properly, then we went back to bed.

Moving along in our story, today Grandpa wanted to take a shower. I got the water the right temprature for him and got him a towel, wash cloth, and fresh clothes. After he was done I helped him get dressed. This was all pretty usual stuff that I did inbetween kitchen work. Once he as dressed I returned to working on supper and Grandpa went about his business. A little later he came upon a pare of his socks in the hall and brought them to me, asking if they were clean or dirty and should he throw them in the hamper. I told him they were probably worn before, but he could wear them again if he wanted, or dispose of them if he rathered.

Grandpa made indications that he wasn’t going to wear them, and left the kitchen entrance. Anyone who cares for little children knows the “radar sense” that you develop . . . some ability to know when things aren’t going quite right, even if the problem is not in your direct range of sight. A few minutes later I stepped out of the kitchen into the hall, and sensed in that moment that Grandpa was in the bathroom, knew he couldn’t have walked down to the bedroom and then back to the bathroom in that time–and then heard the toilet flush.

A quick sprint to the bathroom brought me the sight of Grandpa standing over the toilet, watching his socks go swirly-swirly round in the yellow piss water, preparing for the downward plunge to a very nasty end in the guts of the toilet, or somewhere further along in the plumping track. The socks had not completely sunk and with a quick snatch I managed to grab them by some still dry parts and extract them from the foul water. Grandpa looked surprised at my intervention.

“Good guess, but that’s not where they go,” I said lightly.

“What,” Grandpa said. “Some things go here, and some things go there?”

“Yep,” I said. “The socks don’t go there.” I hung them over the side of the garbage can to drip some of the liquid away.

That incident came as no surprise to me. I had been expecting it for weeks. Grandpa’s confusion of objects is such that just about anyone could see that sooner or later (and sooner more likely) the toilet would become the receptical for all sorts of items . . . clothing, dishes–anything that can be “put” someplace is fair game for being put in the toilet. Of my worst fears, this is number 3.

My worst fear is that Grandpa will somehow manage to burn down or blow up the house taking himself and the rest of us with it.

My number 2 fear is that Grandpa will somehow manage to seriously injure himself mostly likely by falling down someplace.

The number 3 fear is, yes, flushing things down the toilet. Grandpa can do all sorts of gross and vile things with all sorts of household objects and bodily fluids and I can handle that. It might not be fun or particularly pleasent, but I can take care of it. But if he flushes his socks or a towel down the toilet and they get bound up somewhere in the waterworks that is going to require some professional to extract it at big bucks. Or if he flushes his dentures down the toilet they might be gone for good.

Grandpa really shouldn’t be alone in the bathroom anymore–that is the plain fact. But it is equally plain that Grandpa still has a sense of modesty, privacy, and dignity and he generally wishes to be left alone in the bathroom to do his business. Most of the time he can manage by himself. When he realize that he needs help he will ask. And when I keep sharp tabs on things and realize he needs intervention I do it. But none of this covers 100% of the time. There are those few occasions which slip through the crack. Grandpa has already once accidentally thrown his dentures out in the kitchen garbage (they were rescued). He occasionally gets confused and cleans his teeth in the bathroom sink. Yes . . . it won’t take but a moment of confusion for him to drop those dentures in the toilet and flush them bye-bye.

So, what do you do? Force a confrontation and tell Grandpa he is no longer mentally capable of being alone in the bathroom by himself? Faced with these type of decisions, I try to count the costs. I know that eventually I’m not going to catch him doing something, and there is going to be a big bathroom crisis that will require someone coming to extract something from the plumbing. That, or I don’t allow Grandpa to be in the bathroom alone.

In my reckoning, Grandma and Grandpa can afford to pay someone several hundred dollars to clean the plumbing. Grandpa can get a new pair of dentures this year under their insurance. Do I want him to flush something down the toilet? No. Do I want him to lose his dentures? No. But to prevent a possible eventual inconvience will I humiliate him now by denying him the natural right of being left alone in the bathroom? My decision is no, not yet. One of two things will probably happen. Either (A) he will reach the state of such confusion that he will no longer be able to let himself out of the bathroom and so the door will, by neccesity, stay open or else someone else with be in the bathroom with him, or (B) he will eventually precipitate some bathroom crises of large preportions and then Grandpa will have to face the fact that he can’t be alone in the bathroom lest he do it again.

But I am going to let events play out as they will, because to me Grandpa’s dignity is worth a few hundred dollars, if it can be preserved a few months longer. Such are the type of decisions one must make.

Things become conflated in Grandpa’s mind. Sometimes it isn’t so much that he isn’t cognizant, but rather that is consciousness of thoughts, events, and facts become so mixed together that is, as it were, communicating from a different reality. Sometimes this confusion and conflation is simply being asked if he wants a cup of coffee which he is then served and drinks. Two hours later someone else asks Grandpa if he wants a cup of coffee and he says, “Yeah, that other guy said he was going to get me one” . . . which is true, but Grandpa has forgotten that the previous cup of coffee was brought and served and drunk.

However, other times the conflating of different events and thoughts becomes more intricate and involved, leading to . . . unique conversations. It’s not as if conversation can’t take place, but it takes place in a different way. It is a conversation of subtle nuance because so much of a coherent conversation depends on the interpretive ability of the people conversing with Grandpa. Just a little while ago I had an interesting conversation with Grandpa. I can’t capture exactly how every word in the exchange went, which means some of the other-worldiness of the conversation is lost, but this is my best attempt at replication.

On Saturdays Grandma goes out with Daryl–it’s a chance for Grandma to get out of the house for some mother-daughter shopping. This conversation started out with Grandma and Grandpa talking about what Grandma had done today. Grandma conclude her description of what she had done by saying that Daryl would pick up a card for her because she had run out of energy and Julie would have her baby any time now, and Grandma wanted to make sure she got a card.

“Oh,” Grandpa said. “Was the baby crying this morning?”

“No,” Grandma said (probably thinking he is off his rocker).

“Oh,” Grandpa said. “I thought probably I imagined it, but the screaming sounded so realistic.”

At observer might think at this point that Grandpa imagined things, but I was with him all day and I knew what had become conflated. “That was the TV, Grandpa,” I said. “There was a cowboy movie on this morning,” I told Grandma. “And there was a baby crying in it.”

Grandpa was silent a minute, thinking. “That was the one with the guy with a rifle,” Grandpa said.

“Right,” I said. He had apparently been following the movie well enough to pick up that the distinctive feature of the hero was that he only used a sniper cowboy rifle instead of a six-shooter.

Grandpa was silent a little longer. “Well,” he said, looking at Grandma, “You going to shoot a path for me?”

Grandma looked at him, and then looked at me. “I’m turning that one over to you,” she said.

“She wants you to explain it,” Grandpa offered.

“Yeah, I know,” I said.

“Well, are you going to do it?” he said.

“I can’t shoot a rifle in town limits,” I said. “And I’m not quite sure what you’re using the metaphor for. You want to go somewhere? I’ll take you if you want to go someplace.”

“You want to drop in on someone?” Grandma said. “You want to see Helen and Hugh?” Then she looked at me and started laughing.

“No,” Grandpa said. “Someone should tell them we don’t need them to come around anymore.”

“I don’t think they’d appreciate that,” Grandma said and started laughing some more. (She thought he was serious, and there may have been some true thought behind what Grandpa said, but I thought it was equally possible that Grandpa sensed Grandma was making fun of him and so dead-panned back his own joke.)

The conversation moved on, Grandma talking about the weather and me saying I hoped Arlan got home before the rain turned to freezing rain.

A little later Grandpa looked at Grandma and said, “So are you going to shoot a path for me?”

“I passed that on to him,” she said, pointing at me.

“I’ll take you anywhere you want to go, Grandpa,” I said. “You just need to tell me where you want to go.”

“Well . . . you got the vehicle? You’re not afraid to go?”

“I’m not afraid. Maybe you could come up with a place I’d be afraid to go.”

“Well . . . I don’t want to be a cripple,” Grandpa said. “I wish I could go someplace where–”

“He wants you to shoot a path to where he won’t be a cripple anymore,” Grandma said.

“Oh, come on, Ma,” Grandpa said.

“I was just using your metaphor, honey,” she said.

Somehow then the conversation got on to living someplace else and I asked him if he wanted to move. (My grandmother was the one who wanted to move to their present house–Grandpa always hated the place.) After talking about the subject in general terms for a bit he said that if it came up he would have to seek and think about it. Then he wanted to know if he was making my life miserable (and by implication I wanted to move to get away from him). “No, no,” I assured him. “You’re not making my life miserable. I just want to make sure you’re happy.”

And that was pretty much the end of our winding conversation.

Thursday is grocery day. While I’m gone it’s pretty much Grandma and Grandpa alone together. Which means I’m always wondering a bit about what will happen while I’m gone. I return and I pull the car into the garage and start bringing groceries in, casing out the joint as I do so to see if anything is wrong. What has Grandpa been up to while I’m gone.

Today I notice that there is a bag of garbage (not very full) down by the trash can in the garage. The kitchen garbage can doesn’t have a bag in it anymore. The bathroom garbage is missing from the bathroom and a single black shoe of Grandpa’s is on the bathroom floor. Otherwise the house seems pretty much in order.

After I’ve hauled all the groceries up from the car and am about halfway through unpacking Grandma comes out and gives me a whispered recounting of some of the things that happened while I was gone.

“He changed the bathroom garbage while you were gone,” she said. “I don’t know what he did with it.”

“I know,” I said. “And he did the kitchen garbage. I saw the bag downstairs.”

“Oh, he did?” She leaves to do some more investigating on the location of the bathroom garbage can. I go downstairs and retrieve the mostly empty bag to the kitchen garbage can and bring it back upstairs. Untying the bag I check the contents. Mostly there is just the few bits of garbage thrown out that morning–the only thing Grandpa added was the lid to the garbage can itself. I pull the lid out of the trash, put the bag back in the can, and put the lid back on the can.

Grandma arrives carrying the bathroom garbage can and our bedroom garbage can. The bag to the bathroom garbage actually hasn’t been changed as Grandpa thought–it’s still half full with tissues. She tells me she found them in her bathroom. Messing around with garbage cans is a fairly common pass-time for Grandpa. Sometimes I think he does it simply because it feels like a productive and right thing to do. The rest of the time it seems he realizes he has messed up and pissed in the garbage can and so he tries to correct his own mistake. Sometimes he gets it mostly right and does something with the bathroom garbage can . . . the rest of the time he gets side tracked and does something with the wrong garbage can because he remembers that he intended to do something with some garbage can but looses track of which one he intended to work with.

I check the contents of the bathroom garbage can and it does look like he probably urinated in there a bit, but I decide it isn’t worthy of a fresh bag. (His problems with pissing in the garbage can have become sufficiently recurrent that I’ve decide I’ll only change the bag once a day, least I end up going through a whole box of bags in a week. I return the bathroom garbage to its proper location and return to putting away the groceries.

But Grandma has more stories to tell.

“Today he arranged the cushions on the couch in a circle,” she whispers. “Then he told me, ‘I’m going to flush that thing after I take a crap in it.’ I told him, ‘Oh, no you don’t, you do that in the bathroom.’”

Then she continues, “So then he uses the bathroom and afterward calls me in because he says he can’t get it to flush. So I go in there and tell him, ‘You push that lever there to flush the toilet, Pa.’ Then he puts down the toilet seat lid and says, ‘See, it didn’t work.’ And I said, ‘No, you use the lever,’ and then I flushed it. And he said, ‘Oh, I knew that.’”

Her voice drops to a horrified whisper. “And he put his wipings in the sink. I told him, ‘Pa, don’t do that. You’re not supposed to do that with them!’ and he said, ‘Why not?’”

I told her that was all right and I had already been dealing with him putting his behind wipings in various places . . . on the edge of the bathroom sink . . . on top of the dresser in the bedroom. “Ooooh,” Grandma says. “I think I’m going to be sick.”

****

What is a particular significant source of difficulty for Grandpa seems to change from week to week. Recently, he has definitely developed a bathroom obsession. It has become the locus of his anxiety over his inability to preform bathroom functions properly. I think it has been this way for some time, but up until recently Grandpa tried to handle his problems himself. I think it has come to the point now where he no longer feels cognizant of how to fix his problems (real or imagined) and must now call on others to help him through bathroom usage. It isn’t a complete need for assistance . . . but it is starting down that path.

Previously, Grandpa has always wanted Grandma for all his troubles and I had to present myself and tell him I would help him with whatever he needed (Grandma becomes quickly exhausted trying to deal with all of his activities). For most things calling out “Ma!” still seems to be his default reaction. But I have noticed a change in regard to the bathroom. He seems inclined to come to me first, now, about bathroom troubles. It could be he is starting to learn that I am the one who is supposed to be tending to his needs now, and that may be part of it, but I think this is primary because in his confused mind most of the trouble with the bathroom is related to objects in the bathroom malfunctioning, and he knows Grandma is no mechanic so he calls on me to fix the bathroom, or at least assure him that everything is working properly.

It has become quite common for him to call me into the bathroom. Sometimes it is for a garbled dialog about the stuff in the bathroom be in alignment and in order and all set. Other times he will simply ask me to look at the toilet and tell him if everything looks all right, or to make sure it isn’t plugged (when there is nothing but water in the toilet). Another time he asked me to come in and look at the toilet because it wouldn’t flush. So I came in (saw the toilet had nothing in it that needed to be flushed) and told him “You flush it by using this lever.”

“I know,” he said. “But it doesn’t work.” I pushed the lever and the toilet flushed. “The bugger,” Grandpa says. “It wouldn’t–last time it didn’t–” Sinks and toilets are nefarious things now, that break and no longer work only to start working again when someone else uses them.

Grandpa has called me in to check and see if there is water on the floor. There is liquid on the floor. “Is the seal leaking?” he asks. “No,” I say, and clean up the mess. “The seal is just fine. Don’t worry about it.”

Then one time Grandpa got up from the supper table and went to use the bathroom. He came tottering back and motioned for me to come. I go with him in to the bathroom.

“What’s the trouble, Grandpa,” I say. “What do you need help with?”

He points at the toilet. “Wipe it,” he says.

Knowing his habit of obsessively wiping the rim of the toilet, I get a piece of toilet paper and wipe the rim. “There. Is that good?”

“Yeah, that’s good,” he says, and comes over to take his leak.

Grandpa is a great believer in cleanliness, and is greatly disturbed whenever he recognizes his own slovenliness or uncleanliness. Since before I came to live with Grandpa I think he has wiped the rim of the toilet to clean up any possible drip from his urination. As his mind has grown increasingly worse he has taken to coming out of the bathroom carrying his toilet paper used to wipe the rim–in search of a place to dispose of it. But now as his problems with making a mess have increased I think his obsession with cleaning up after himself has become much more confused and obsessed. He knows he makes a mess of things, but he often doesn’t understand how, or how to right the matter. He ends up trying to clean everything that might possibly have become contaminated, and it becomes one confused spiral of imagined cleaning (and attempted setting to right) until Grandpa is so uncertain and mixed up that he must go for help.

****

Tonight there was an example of the confusion of Grandpa’s life.

It was after dinner and he went to the kitchen sink to wash his dentures and put them in water to soak for the night. As usual he got side-tracked by the dishes in the sink, but since it is a harmless diversion and he sometimes will eventually get on to this teeth all by himself, I usually let him fiddle around with the dishes. So I kept half on eye on him but didn’t go to stand over his shoulder and watch his every move.

A little later I heard, “Awww . . . shit. Right down my leg.” I heard some more muttering about the bathroom and related things that made it very clear that someone thought they had just had an accident. I came over to see Grandpa rolling up and pulling up his pant leg as if he was preparing to go wading.

“Having trouble?” I said.

“Yes,” Grandpa said.

“Need to use the bathroom?”

“Yeah, didn’t you hear me? I already did it down my leg.” And Grandpa started off toward the bathroom.

I checked the area by the sink. Early after I moved in Grandpa decided to sleep out in the living room one night and in the middle of the night needed to use the bathroom and ended up (for one reason or another) not making it. On that occasion he got his clothes wet, and made a considerable wet spot on the living room carpet which I had to clean up. A quick inspection of the floor by the kitchen sink showed no wetness on the floor, so I was immediately suspicious as to whether Grandpa had actually had that accident that he imagined.

I checked the sink. The top portion of his dentures were lying in the sink, the hose and sprayer lying in the sink with them. I immediately guessed what had happened: Grandpa, confusedly using the sprayer manages to hit himself (we’ve all done that on one occasion or another) but he is too confused to understand what the sprayer is doing and as soon as he feels the wetness on his pants his mind immediately connects that with wetting himself and now he must deal with this crisis and use the bathroom.

Grandpa is heading toward the bathroom, but Arlan is already using the bathroom that he normally uses. I follow him and explain that the bathroom is in use. He seems momentarily stumped as to how he should proceed, but appears to be considering going into our bedroom. I’m concerned he might decide to relieve himself in there, so I suggest he use Grandma’s bathroom.

He agrees and starts toward Grandma’s bathroom. I decide considering his present state I better follow and make sure he doesn’t do something that puts Grandma into a fit. But Grandpa can be a little irritated and shy having someone watch his every move in the bathroom so I hang back trying to just get a feel for what he is about to do and make sure he doesn’t do something so drastic and peeing in Grandma’s laundry hamper (that really wouldn’t go over well.) Instead, next thing I know I hear a sploosh, sploosh and I quickly glance in to the bathroom to see Grandpa swishing his hands around in the toilet bowl water. He takes a sodden piece of toilet paper and begins washing the inside and rim of the toilet.

At this point some people would freak out. There are certain things that cross some line of tolerance for certain people and certain acts go beyond bearable. Grandma is grossed out to the point of sickness by the thought of finding behind wipings on a dresser. I can take that in stride. I’m not quite sure how Grandma would have reacted to finding Grandpa’s splashing in the toilet water. This is something I had already suspected Grandpa of doing previously when no one saw (once when I asked him to test the shower water and see if I had got it to the right temperature he had lifted the toilet seat to check the toilet water, being saved that time only by my correction,) and so wasn’t very surprised to catch him at it now. Somehow, splashing around in the toilet water strikes me as a little more cross and uncleanly than leaving your butt wipings in the sink or on the dresser, but I suppressed the wince and refrained from verbally jumping on Grandpa and telling him he shouldn’t be doing that.

If I was faster and caught him before he started . . . but at this point I simply watch. He can’t get his hands any dirtier, and correcting him at this point will only humiliate him. In his right mind he knows you’re not supposed to splash around in the toilet. Apparently he thinks he is cleaning the toilet. I watch, and think how glad I am that the toilet water wasn’t well used. There are worse things, I tell myself, and it won’t do any good saying anything now.

I think Grandpa might have got an inkling that something wasn’t quite right with what he was doing because he stopped and through the toilet paper into the toilet and turned to the sink to wash his hands. At this point I tried to draw his attention to the soap but after running some water over his hands he lost interest and seemed to hunt around for a towel. I pointed out a towel and he half-heartedly wiped off his hands. I could tell he was getting increasingly confused . . . he was no far afield of his reason for entering the bathroom.

“You want to go pee?” I prompted.

“Yeah,” he said. “I’ve been wanting to go all this time.”

So he finally went . . . in the toilet, properly. I stepped away for a bit to allow him to finish up without feeling like someone was breathing down his neck. I come back a minute later and his has toilet paper on his hand and is scrubbing at the floor around the toilet. He ends up giving the exterior of the toilet and the floor around the toilet a cleaning before he is finally satisfied. We finally leave Grandma’s bathroom. Arlan has left the other bathroom and he stops in there to make sure things are all set to right, and perhaps to do some more cleaning there as well.

Once he is all finished with the bathroom he goes into the living room and sits down to watch TV. His top dentures are still in the kitchen sink, and his bottom dentures are still in his mouth. I get the dish from beside the sink and put his top dentures in. Then I go and ask him for the rest of his teeth, and set them all on the counter to soak for the night.

Such were this evening’s adventures, transcribed at 11:45 PM. I should have gone to bed two hours ago, but I wrote this instead.

Sometimes Grandpa does or says things that make me wonder how his mind works under the affects of Alzhiemer’s. Other times he says or does things which makes me think I can understand some glimmer of how his mind works. I think, to a large degree, Alzhiemer’s twists and exaggerates quirks and flaws that are present in all of our thinking so that the person who carefully observes can see echoes and reflections of themselves in the Alzhiemer’s patient.

As one small example, all of us find our minds wandering on occassion. Some of us are more prone to wandering thoughts than others, but opposed to our normal sometime problems with keeping our minds focused and our attention fixed, an Alzhiemer’s paitent is fixed in this state most of the time. Things are quickly forgotten and information is retained with difficulty as the mind constantly wanders off and is distracted by intruding thoughts.

Grandpa often sits silently on the couch, sometimes seeming to doze and other times simply sitting there. I suspect that at those times his mind wanders from one thought to another, drifting along in that way you may have occassionally done daydreaming as a child, only to come back to the present and realize an hour or more has passed. As a healthy child or adult you usually day dream about past events, future plans, or imaginary adventures. But what thoughts to an Alzhiemer’s patient mind wander through?

I don’t think there is one simple little answer to that question. Probably Grandpa’s mind sometimes wanders through memories of the past, concerns of the present, or thoughts about the future. But some times I think he thoughts might simply wander, perhaps unconciously seeking out things forgotten. He will sometimes ask questions out-of-the-blue about things. A common subject is the meaning of words. So far they have been unusual words that I think he once knew the meaning of, but now only retains the memory of the word without the meaning.

“What is a hedonist?” he asks one night when he is lying on the couch.

“What does occlusion mean?” he asks after supper one day.

Then one day recently he said something I found particular telling. It was around lunch time and Melinda, Grandpa, and myself were sitting around the kitchen table. Suddenly Grandpa spoke up.

“I sit there and I think and I think,” he said. “I think until I think I’ve finally got it all thought out. Then I think Earwig and I don’t know what that means.”

It was a very odd thought to come out of nowhere, but I explained to him that an Earwig was the name for a type of bug, and tried to explain what the bug looked like. Grandpa didn’t seem to have any recognition of the bug I discribed (though I’m sure he has seen them many times during his life and once did know they were called Earwig’s) and seemed to lose interest.

His mind was probably already wandering off again.

It’s never fun being sick but there is an added layer of difficulty when you are sick and have other stress in your life, or other people you must tend. Winter is the time for colds, and about as soon as I moved in with Grandma and Grandpa I was dreading the first winter sniffles, and wondering how bad it would be. Every winter it seems I get at least one whopper that will lay me up for a few days, and when you’re in charge of keeping the house running a few days seriously under the weather is a luxury you really can’t afford.

I’ve suffered through two colds so far this winter. Thankfully, neither of them were very bad. Fighting off the sickness left me more tired, but didn’t put me completely out of commission. The greatest problem, as I expected, was sleeping at night.

Sleeping in the same room as Grandpa is difficult to begin with, but when my own sickness makes it even harder for me to sleep, and in greater need of sleeping . . . well, the nights can be both very long and too short. Instead of one restless occupant of the room we have two and when Grandpa isn’t keeping me awake my own miserable condition keeps me awake. Feeling poorly and very tired, helping Grandpa when he can’t figure out how to work his blankets, or how to find the bedroom door, seems like such a big project. Instead of going out to check on him when he is taking a long time to come back from the bathroom I drift back off to sleep.

I am just getting over the second cold. Oddly enough, it consisted in only a cough that developed last Wednesday. There was no sore throat, no stuffy nose . . . only the cough. But the need to cough every ten minutes makes it very hard to sleep. You lay in bed at night and you’re just about drifting to sleep when you realize you need to cough. You suppress the desire to cough and that only makes it get worse until fifteen minutes after you lay down you’re sitting up coughing violently. After being thoroughly woken up you can lay down to repeat the process again. It begins to feel like a form of torture. Once you finally get to sleep–when is it, after midnight?–you wake up every few hours with a violent coughing jag and hack up everything that was pooling in your chest for the hours you slept.

And in-between all that I wake up for Grandpa’s trips to the bathroom. Sometimes he manages the entire procedure by himself, sometimes I must help him back into bed, or lie in bed waiting for him to finish fiddling around with his bed and turn the light back off.

Morning comes to soon, and you don’t feel rested or ready to face the day.

But the cough is getting better and soon it will be gone.

Trouble increases with every aspect of life, but Grandpa’s bathroom difficulities in particular catch ones’ attention. We are seeing glimpses now of where Grandpa is going with his bathroom troubles. His worst moments are still just that–occasional worst moments. But his departure from reality is becoming increasingly severe.

Grandpa peeing in the bathroom wastebasket, as I think I’ve mentioned before, is no longer a surprising occurance. But imagine that as the beginning point of an increasingly worse spiral.

One evening this week Grandpa came into the living room and handed Grandma a plate and fork. “I need to take a crap,” he told her.

“Okay, go,” she said. “You hurry along.”

“Why?” he asked.

“Because I want you to hurry up and go to the bathroom,” she said.

“Oh,” he said, and started back toward the kitchen.

I got up and followed. I came into the kitchen behind Grandpa in time to observe him dropping his trousers and preparing to sit in his chair.

“Grandpa,” I said. “Don’t you want to do that in the bathroom?”

“What?” he said blankly. Then he looked down at himself. He gathered that I objected to something he was doing, but couldn’t figure out what. I guess he caught on that he wasn’t doing it properly and realized that if he wanted to take a proper crap he needed to drop his undershorts as well. He promptly began attempting to pull down his undeshorts.

“No, Grandpa,” I said, stopping him. “You don’t want to do that here. You want to do that in the bathroom.”

It took repeated prompting before he realized. Once he realized his error he said, “Well, gee, what are you trying to get me to do it in here for?” as if going to the bathroom in the kitchen was my idea.

****

Another day this week he was having a bad evening, needed to take a leak, and couldn’t find the bathroom. I directed him to the bathroom but I saw he was very confused (indicated in part by the fact that he didn’t shut the bathroom door after himself as he does when he is in his right senses) and so I hesitated before leaving, and saw him beginning to undo his pants in front of the garbage can.

“You’re not quite there, Grandpa,” I said.

“Uh-huh,” he said, and continued to work at his pants.

“No, Grandpa,” I said. “A little further. The toliet is there,” I added, pointing.

“Yep,” he said, taking maybe a teeny step forward and not taking his attention off his pants and the garbage can.

“Keep going,” I said more urgently. “You’re going to miss it.”

“Mmmm,” he said, finally getting his pants open.

“Grandpa–”

It was no good. He didn’t properly understand a word I was saying, and to get him to take a leak in the toilet I would have to physically propell him the rest of the way to the toilet and do the aiming for him. I wasn’t ready to violate his personal dignity to that extent so I watched helplessly as he finally managed to get a stream of urine going and peed inside the new garabe bag (I had just finished changing a previous urine soaked bag) and all down the side and across the floor.

“Am I doing it right?” Grandpa asked. “Is this right? Is this how you want it?”

I couldn’t stand to keep watching. I didn’t want to tell him he was pissing all over the floor. I didn’t want him to feel the utter fool when he finally understood my words and realized he had just done a completely stupid thing right in front of me. So I left. Let him finish and leave, I figured. I would go back after he left and cleaned it up.

I went into the living room to wait but it was little more than a minute later and Grandpa was sticking his head out the bathroom doorway. “Hey,” he said in a miserable voice. “I need help. I made a mess in here. I screwed up.”

“It’s okay, Grandpa,” I said, trying to soothe him. “Don’t worry about it. I’ll clean it up. You don’t worry about it and just go back and sit down on the couch and rest.”

“I’m terribly sorry,” he said, still sounding wretched. “I don’t know how–I shouldn’t have done it. It’s all over the place. You shouldn’t have to clean it up. I–”

“It’s all right, Grandpa.” Sometimes words are not enough, and this was one of those times. So I gave him a hug. “It’s okay. Don’t worry about it.”

The hug seemed to make him feel better because he immediately stopped apologizing and gave a little laugh. “Well,” he said. “My foot is soaked.”

So I took off his socks and made sure he went to sit down. Then I cleaned up the bathroom.

****

Today Grandpa had one of his busy afternoons. He couldn’t sit still, and was going all about the house with me all about the house after him making sure he wasn’t doing anything too serious.

Inbetween checking on Grandpa I was trying to get work done on my computer. Returning to my seat I saw Grandpa enter the kitchen and set down his cane. He turned to face his chair at the table and unzipped his fly. I got up from my chair and started toward the kitchen.

“You going to take a leak, Grandpa?” I said.

“Yep,” he said.

“Well, how about we do that in the bathroom,” I said in the same bland matter-of-fact tone.

“Well,” and I could see the little light going on in his face as he realized what he had been about to do. “Okay,” he said.

Everything is becoming the toilet now. Only once in awhile right now, but more and more it comes.

Grandma and Grandpa were invited out for a midday Christmas meal at my Uncle Kevin’s. Arlan and I took them down for the visit. It was a pleasant visit, especially since Kevin and Ruth’s two kids can play musical instruments and we got the chance to listen to them. Music and food are two of the few things Grandpa can still really enjoy, so he enjoyed himself as well. He wasn’t too bad as far as Alzheimer’s’s confusion was concerned, either. His worst moment was probably when he headed off toward the dining room to “use the toilet” when the toilet was upstairs. I corrected him, and made sure he got upstairs to the proper room–but that could have been unpleasant.

We stayed about two hours visiting and then Grandpa wanted to go home. This seems to be his max.

By the time we got home it was late afternoon. Lack of sleep is a constant problem for me while caring for Grandpa, but for some reason the last several days I have felt especially short on sleep. While riding home from Kevin’s (Arlan drove) I felt like I desperately wanted to fall asleep. Once we got back home I put together supper and stuck it in the oven. I don’t like taking naps, and often times I will try to fight my way through the day, but it is very hard to do that the entire week when I’m usually running on seven nights of poor sleep. Grandma really isn’t capable of properly tending to, and watching over, Grandpa, so the only time I feel like I can truly go off duty is when Arlan is home to spell me. That is the only time I feel I can truly go into my room and shut the door without being there with my ears straining for any sound hinting at trouble.

Maturity told me that now was the time to take a nap (much as I wanted to get something done) so I should suck it up and go take advantage of the opportunity. Leaving Arlan with instructions on when to check supper I went back to my room and shut the door. I am a light sleeper, so I folded a shirt over my eyes to keep out the light, put in ear plugs to keep out the noise, and tried to get some sleep. I thought I just laid there waiting and not sleeping, but apparently I did sleep. I jerked up at the sound of my name and decided I’d better get up. I came out to the kitchen to discover an hour and a half had passed since I had laid down and supper was being served.

It was then I learned that after I had gone to lay down what had started out as a good day for Grandpa had quickly become a bad one. This is an example of why I can’t rest easy unless there is another capable adult in the house. What Arlan retold didn’t strike me particularly unusual or surprising but he was . . . unsettled or appalled, maybe both . . . I’m not sure which is the best word to describe Arlan’s reaction.

While I was gone, Arlan informed me, (over the course of two hours,) Grandpa had peed on a small foot carpet in the kitchen, poured coffee on the table, tried to go outside without shoes on, and stuffed his feet into the garbage can. Grandpa had also been fumbling around at the stove and could have burned himself if one of the burner grates had been hot. Arlan admitted that he pretty much had to follow Grandpa around taking care of the trouble he got himself into. My inclination was to say rather blandly that it sounded very much like a normal day, and if seeing Grandpa fumbling around at the stove was disconcerting, just wait until he started fiddling with the burners while you were trying to cook (like he has done to me). Everything that Grandpa had done did sound very typical given his past activities had have had to real with, and have recounted before here, especially given his propensity to confuse the kitchen with the bathroom but I decided it was nicer for both Grandpa and Arlan if I didn’t go on about how all those problems were nothing really new or particularly unusual.

Later that evening Arlan said we had better make it official that we aren’t going to leave Grandma alone with Grandpa anymore, even if that means we can’t both go home and visit with our family on Sunday. We both have known this was coming, and I really have felt that we were gambling quite a bit as it was–on Grandpa’s bad days he requires more intensive care that Grandma can give, and if Grandma has a bad day she needs someone to care for her as well. Basically, on the Sunday’s when Nate doesn’t come down to visit them we’ve been gambling that they’ll both have a pretty good day while we’re out of the house. That type of gambling can’t be kept up, and Arlan is right. But the fact that he made this pronouncement after he experienced what I have been experiencing almost provoked some dry commentary . . . but I canned it because what this really says is that Arlan is more willing to face facts. I’ve lived the same thing as he did for this short afternoon (perhaps worse) and I’ve been willing to keep trying to squeeze out a few more weekends when we can both go home, hoping, risking, that Grandpa won’t be too bad, and Grandma won’t have a bad spell, and we’ll come back to find Grandpa still dressed and the house still standing. I run into a problem and I like to say to myself “We can handle it, we can deal with it.” Arlan runs into the problem and he says, “Things must change.” A little voice in me wants to say, “Oh, come on, you’re just weak. You just can’t really hack it well enough. It’s not that bad. We can keep going on like this a little longer.”

Except Arlan’s right, and I know it. So what does that say about me?

And while we’re on that subject, I know I take a lot of other gambles I shouldn’t . . . and maybe some that are requirements of living. I don’t know. That is the difficult thing . . . it is hard to separate out self-delusion and self made excuses and those that are really required. Shouldn’t I really go with Grandpa every time he goes up and down the stairs? But I don’t. Sometimes I do, but often enough I don’t, and it is a gamble. I think maybe I ought to get up more often in the night to make sure Grandpa is getting into trouble when he goes to the bathroom, but I don’t. And in each of these cases I tell myself nothing has gone wrong yet, we can’t eliminate all danger, and we can hack it. But can we really? Or are those the excuses I just feed myself when I am too tired, and when I don’t want to do things differently?

Sometimes it takes a bad accident or a big crisis to make us realize we must do things differently, but I hope it won’t be that way for me. Already Grandpa can’t go without general supervision, but the amount of supervision will need to continually increase until at some point he will need constant close supervision. We are at that transition point now, the place were I am really starting to supervise him closely most of the time, but then when necessary or convenient I tell myself he can go without as much supervision as I am normally giving for a little while. Every morning I go down into the basement to do some exercising . . . I come up every ten minutes or so to check on Grandpa, but often Grandma is sleeping in her chair, and if not she generally tries to ignore Grandpa, so for those ten minutes in-between checkups Grandpa is free to do whatever his increasingly confused brain thinks to do. And then three times a week I am gone from the house for a half hour on my bike ride . . . time when Grandpa will either sit quietly on the couch and do nothing or else wander around the house and do . . . something. But I take the risk, and I take the risk again on Thursday when I’m out of the house for about 2 and a half hours buying the weeks groceries.

I feel a little pang when I’m not being as conscientious as I feel I ought. There are those times when I stretch my observation of Grandpa a little thin because I want to get something done, I take a risk, take a gamble, or just simply get a little lax for my own expediency. Yes, sometimes risks must be taken . . . but are the ones I’m taking necessary? Should I put off getting groceries until the weekend when Arlan is home to cover home base? Should I not let Grandpa out of my sight, ever, unless someone else is watching him in my stead? Am I telling myself everything is okay when really it isn’t?

Do I have one big act going on where if Arlan or someone else where to live in my shoes for one day they would say, “Hey, you can’t be doing that. It’s too dangerous.”

I don’t think we’re quite to the point where I mustn’t let Grandpa out of my sight. But I do see the day approaching, and I hope I am honest enough to realize that more sacrifice is necessary then, before Grandpa causes a big catastrophe that forces me to realize I’ve been deceiving myself.