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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.

Absurd: “Contrary to reason or propriety; obviously and flatly opposed to manifest truth; inconsistent with the plain dictates of common sense; logically contradictory; nonsensical; ridiculous;”

Sometimes life in general strikes me as absurd. And I find the absurd funny, most of the time. Whether that observation about the absurdity of life is valid or not, life with Grandpa is certainly absurd–with an emphasis on the nonsensical and contrary to reason and propriety. Some people find the absurd very frustrating, but with Grandpa I usually manage to maintain a fairly good sense of humor.

Today Grandma had an angina attack and was laid up in bed for most of the day, leaving Grandpa with me as his only company. He went to check the mail three times in the afternoon. The first time he brought the mail in. The second two times I think were sparked by latent agitation over Grandma being missing and Grandpa feeling like he needed to find something to do.

The first and second time he went out to check the mail he got himself together pretty well. The third time out I caught him walking toward the stairs wearing only one shoe–on the wrong foot–and carrying a large couch cushion under his arm, and carrying a second pair of shoes as well. Grandpa doesn’t like–in fact he hates–to be humiliated. For this reason, as a rule, I avoid pointing out to him that he is doing something wrong unless he expresses a desire for help. However this is a delicate balance because he if he discovers for himself that he was being a fool and realizes that you didn’t point it out to him he still feels humiliated. But my normal course is to ask him if he is having trouble, and if he needs any help. If his answers is “No and no,” I usually will let him continue on his own course, however absurd and ludicrous so long as the situation is not dangerous or heading for an outright disaster. I feel it saves Grandpa from having someone continually breathing down his neck saying “Don’t do that” and “Don’t do this” and frankly most of the stuff he does is silly or pointless, but there isn’t any real harm in it, so why give the poor guy a hard time. But no method is perfect all the time.

“Where are you going?” I said to Grandpa as he walked by. “You going on a trip?” Sometimes a general question will make Grandpa stop and consider what he is doing. Sometimes. But not this time.

“Yep,” Grandpa said without halting, and continued toward the stairs.

Carrying a large pillow under one arm and wearing the one shoe on the wrong foot made navigating the stairs harder. I watched him carefully as he went down the stairs, tensed and ready to lunge after him should he start to fall.

“Where is he going?” Mel said, stopping in the hall.

“He’s going out carrying a pillow and a pair of shoes, and wearing only one shoe,” I said.

“You’re going to let him go?” she said.

I shrugged. “He won’t get far.” I was confident that he wouldn’t take more than a few steps out in the cold weather before realizing he hadn’t attired himself correctly. He would realize his error for himself with me telling him he wasn’t allowed to go out as he wanted.

I started down the stairs and by the time I reached the front door the latch was already rattling. I opened the door.

“You want to come back in?” I said.

“Yeah,” Grandpa said, sounding equal parts surprised and perplexed. “I can’t be out here like this. I only have one sock on.”

And then I couldn’t help it. If I had acted completely normal, as if wasn’t at all odd to accidentally go walking out the front door without one of your shoes on, Grandpa might have escaped without embarrassment. But his tone of bewildered surprise and shock was too much, and I started laughing. Fortunately Grandpa must have seen some of the humor in it because he looked at me and started laughing as well. But he was embarrassed too, because as funny as it was he also realized that it was funny because he had done a very foolish and silly thing.

“Well,” he said. “You think I should sneak in the back way to escape the humiliation? I’m sorry–”

He started his usual apologizing, but I told him it was no problem, and he wasn’t stupid, I just thought it was funny, that was all. Trying to choke back my laughter I helped him back up to the top of the stairs. I relieved him of his couch cushion and his extra pair of shoes, switched his one shoe to the proper foot and helped him put the mate on. Then I gave him his cane and let him go out to check the mail again.

****

Grandpa is having increasing difficulty in relating properly to everything, but this is starting to show in particular in relation to his clothes. He often fails to remember what clothes go on first, and what clothes go on what part of his body. Some days he is better than others, but one day a week or two ago every time I turned around he was out of his clothes and needing my help getting dressed. He was trying to go to the bathroom but would always end up getting undressed instead of doing his business. Late afternoon I found him completely naked in the downstairs bathroom trying to put on his undershirt like a part of undershorts.

That is Grandpa at his worst. Sometimes he can still get himself completely dressed. Most of the time he needs some prompting. But besides dressing problems he is also regressing in his cognizance of the use of his clothing. Years ago when he had everything together Grandpa carried around a wad of carefully folded toilet paper or paper towels to blow on nose with. He was neat and he was careful. Now you can often see Grandpa using a garment to wipe his nose. It looks very childish, of course, and I think it is a combination of regression to childish impulses, and also a confusion of use–he sometimes mistakes his clothing as a proper object for nose blowing.

This confusion has led to some more absurd happenings.

Grandpa usually goes to bed wearing an undershirt and undershorts. Since he has begun worrying about wetting the bed (something he hasn’t actually done, yet) he wears a diaper to bed instead of undershorts, though he has a problem of forgetting to put the diaper back on during his many night time trips to the bathroom, and sometimes in the middle of the night he ends up switching back to his undershorts, and other times ends up going to back to bed with nothing on. Which means I must go to the bathroom and fetch his diaper and help him put it back on and then tuck him back in.

Anyhow . . . one night he came back into the bedroom after a bathroom trip wearing his undershorts and carrying his undershirt balled up in his hands. Apparently somehow in the process of going to the bathroom he had become confused into taking it off. I asked him if he wanted help putting the undershirt back on. He said, “No. I think I’ll just go to bed.”

Forward to later in the night and I wake up to Grandpa coming back from the bathroom again. He doesn’t turn the light on, but feels his way over to his bed and sits down on the edge. I can see him in the dim light filtering through the window into the room. He doesn’t look much inclined to lie down immediately so I sit up to see what he intends to do. Grandpa plucks at the leg of his undershorts and then promptly pulls the garment entirely off. Balling it up decisively, he wipes his nose vigorously on his undershorts and tosses the garment away in the darkness. He is sitting on the edge of his bed in the darkness wearing absolutely nothing.

“Um . . . Grandpa,” I said. “You think maybe you want to put something on?”

“Oh,” he said. “I suppose I can put some socks on.”

“No,” I said, picking up the diaper from the floor. “How about this?”

“Oh, that. Okay.” And he let me help him put the diaper on without the least sign of realizing he had just done a very absurd thing.

The next night he did an almost exact repeat. Except this time he was wearing his diaper and pawed around on the floor until he found his underwear. This time instead of simply wiping his nose he carefully took his underwear and blew his nose on it nosily.

It is all very absurd, especially when I know very well that if Grandpa realized what he was doing he would be horrified and embarrassed–both at the foolishness of his actions and because he is very modest and is mortified when he is aware of his nakedness. But often he doesn’t, and I try to simply help him as need and make no mention of the situation.

****

Grandpa’s back has been bothering him more than usual today. The pain has come severe enough at times that he must quickly sit down or lay down. He lay down on the couch around nine and promptly fell asleep. I am always loathe to move him when he is sleeping so well on the couch, (especially since he can wake up confused or unwilling to go to bed, and because it can at times be a big project to get him to bed,) but I am leery about leaving him to sleep alone on the couch. Last time he did that he had an accident and peed on the carpet. Not a big crisis, but it is hard for me to sleep easy when he isn’t in his bed.

About nine-thirty I woke him up and asked him for his teeth. He gave them without questioning, and this preempted one big hassle of the bedtime routine–helping him clean his teeth. Then just now at almost eleven I finally woke him up and convinced him that it was time to go to bed. As I was putting him to bed I realized that tomorrow is garbage day, so I need to get everything ready to put on in the morning, and I told Grandma not to worry about the kitchen because I would straighten up the kitchen.

I will do those two things and then finally head off to bed myself.

Today was a bad day for Grandpa. Somehow, I had some inkling before lunch–maybe it was the fact that he couldn’t find his clothes to get dressed when he got up in the morning–but by lunch it was quite evident. With an effort he managed to struggle through eating most of his lunch, but when it came time to eat his little tub of yogurt to finish up his meal he hit a bad spot.

I think he got really derailed when he started eating his yogurt but then decided his bottom false teeth needed to be cleaned. He pulled his dentures out and splashed the remainder of his coffee over them, and then looked confused as he stared at his coffee covered teeth and the mess on the table. Seeing what he had intended to do, I said, “Grandpa, would you like to clean your teeth?”

“Yes, that’s what I was aiming to do,” he said.

“Here,” I said, “give them to me. I’ll do it for you.”

I went to the sink and washed off his teeth and then brought them back. He had to turn them around several times before he finally got them oriented right, but he finally got them back in his mouth. But by this time he was completely derailed from the process of eating his yogurt. He pawed around the table, fiddling with everything but his yogurt. Grandma and I tried to nudge him in the right direction until he finally said, “I feel like I’m a spectacle that everyone is staring at.”

“Okay,” Grandma said. “I’ll leave you be.”

She walked out of the room to go do something else and I stepped out far enough so Grandpa couldn’t see me, but where I could watch him and help in necessity. Grandpa continued to grope around in bumbling confusion. He latched onto his coffee which he struggled with for a bit, straining to bend the ceramic mug into a different shape. When that was unsuccessful he set the mug down and finally lighted upon the tub of yogurt sitting right in front of him. He promptly turned the yogurt container upside-down and tried to stuff it into the coffee mug and then when that didn’t do what he wanted he pulled the contain back out and turned it upside down on the table. Seeing the situation rapidly heading toward an end result with yogurt all over the place I intervened again.

“Grandpa,” I said. “Do you want to eat the yogurt?”

“I want . . . I . . . Make things . . . to do . . .” as usual when he is in his worst state of confusion, he was completely inarticulate. At that point I wasn’t sure if he could even remember what he had been trying to do. When failed action can snowball into another until Grandpa can no longer remember what he had been trying to accomplish.

“Here,” I said, removing the coffee mug and setting the yogurt tub upright in front of him. “All you need to do is this.” And I stuck the spoon into the yogurt.

Grandpa stared at the spoon in the yogurt and then laughed. “How did you do that?” he said. “I was trying and trying and it wouldn’t go in. How did you make it go in?”

“Well, I . . . stuck it in.”

“How is it so easy for you? I couldn’t get it to do that.”

“Well, actually, Grandpa, you were trying to do things with the coffee mug. That doesn’t work so well.”

“I don’t understand how you did it,” Grandpa said with a little laugh. “I guess there are a lot of things I’ll never understand.”

Then he ate his yogurt.

It is getting increasingly hard for Grandpa to feed himself. The specter of the time when he no longer will be able to feed himself is raising its head. Most of the time he can still manage–thought making coffee for himself is something he lost the ability to do months ago–but some times he is confused where to through his garbage, often tossing little bits of food onto the floor right next to the garbage can instead of in it, or else getting distracted into carefully cleaning his plate with a tissue instead of eating his food. Rarely, but now to become ever more common, he becomes utterly befuddled and eating becomes a task that can’t be accomplished. A week or two ago I gave him a muffin to eat. He chopped the muffin up with a fork and then looked at it and said, “Okay, now what do I do with this? What am I supposed to do with this thing?”

“Well,” I said. “You spear it with a fork and eat it. Or else you can pick it up with your hands and stuff it in your mouth.”

“Oh,” Grandpa said, looking at the chopped up muffin. “That’s all? Nothing more?”

“Nope.”

So he at his muffin. But times like that, and now today with his yogurt, will become increasingly common. Eating is becoming a battle.

****

After lunch Grandpa laid down on the couch and I went to my room. But no more than a few minutes later I heard tell-tale clattering coming from the kitchen. A little later I went to investigate and found Grandpa fiddling with the dishes. I guess he had decided to take a few minutes rest and while lying on the couch it occurred to him that the lunch dishes had not yet been taken care of, and so he got up to do it. My Grandfather was always an orderly man, and that deep seated impulse remains with him, thought Alzheimer’s’s had twisted it so that he no longer can neaten or clean properly, and sometimes doesn’t even recognize what truly is put into order.

Grandpa wanted to neaten up the kitchen and while I was uncomfortable leaving him unsupervised I wasn’t going to order him to stop like Grandma often does, and I didn’t want to give up my quiet time so I could supervise his activities. Generally his cleaning up is fairly harmless–consisting a great deal in turning on and off the faucet, trying to get it to work “right”, and cleaning dishes (and his teeth) in the oddest ways . . . often cleaning dishes with his dentures brush and cleaning his dentures with the dish scrubber. Harmless stuff, if perhaps maddening to some observers.

My concern is always the chance that he might in an unobserved moment veer onto a different and more dangerous course. Today I settled for leaving him to what appeared to be his harmless business and check on him every once in awhile.

I returned to check on him several more times to find nothing dangerous occur. At one point I manged to determine that he wanted to clear the dishes off the table, and so quickly cleaned the up before leaving again. I next returned after I finished my reading for the day. I entered the kitchen to find Grandpa stripped down to his undershorts standing at the kitchen table with a washcloth and a cup of water. I intuited that he had started out somewhere down the road thinking about washing the table and had ended up thinking about washing himself and got the two mixed up. Grandpa often gives himself a sponge bath in the bathroom sink. He sometimes gets rooms conflated together, the kitchen and the bathroom having become the same room before (as the living room and the bedroom have as well) and the kitchen table had become the sink.

Grandpa swirled a rather large amount of water about on the table with the wash cloth and then began scrubbing at his armpits saying, “Ohhh, cold, cold. It’s cold.”

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

“Oh, I’m almost done,” he said. Then he took the cup and splashed some more water on the table (in his imaginary sink, maybe,) and swirled it around some more with his washcloth. Perhaps at this point his brain clicked back in gear and he remembered where he actually was because then without further comment he tottered off to the bathroom with his cup and washcloth and continued his bathing for another ten minutes or so. When he came back out with his hair neatly combed I helped him get back in his clothes

****

Grandpa was agitated throughout the afternoon. Part and parcel of the bad days is an increased level of agitation. It’s almost as if the unease and confusion settles into his bones and he is trying to fight it off by setting everything–imagined or otherwise–to rights. I think these times are some of the most stressful for Grandma–when Grandpa is so physically and verbally agitated and insistent, not to mention nearly if not completely incomprehensible. I try to help Grandma by being the one to deal with Grandpa and his agitation, and I try to help Grandpa by listening to him, doing what I can for him, and answering him as best I can so that in some way–as much as possible–he feels that his concerns were heard, and that somebody his handling all those worrying things that are out there.

So I kept getting up from my computer to go deal with Grandpa. It was getting on toward 5:00 PM and I had just recently finished getting Grandpa a cup of coffee when Grandma finally got up from her easy chair and went into the kitchen.

“Pappa, what are you doing?” she said, staring at Grandpa. He was down on his hands and knees and was studiously running the bottom of an empty coffee much over the front of the cabinets.

“Grandma,” I said quickly. “He is having a very bad day. So long as he isn’t doing anything dangerous, just let him be.”

“I’m removing the burrs,” Grandpa said, and continued to move the bottom of his cup over the woodwork of the cabinets, removing the “burrs.”

Thankfully, Grandma let him be and didn’t turn it into a confrontation.

And that was today. Inbetween all that I tried to get the cover ready for my book. Didn’t get that finished, but I think I know how I need to do it. I can’t use the cover generator from LSI . . . I’ll just use their template guideline and create my own one-piece TIFF file. But then at the end of the day I discovered that I’m supposed to save the TFF in the CMYK color format and GIMP (my image editing program) doesn’t natively save in CMYK color mode, so I need to download and install a plugin.

But then it was time to make supper, so that is where I had to stop for today. Hopefully tomorrow I will be able to install the plugin without trouble, and maybe actually get the cover put together so I can actually get the book out for printing.

Right now it is 11:15 PM, and tomorrow morning starts with Grandpa rising. I’m going to be short on sleep again, and I need to remember to make the bread dough for supper and we’re out of garlic because somehow the last head of garlic I bought disappeared somehow, so we’re not going to have fresh garlic for supper tomorrow night . . .

But there are worse things.

Everyone is in bed for the night, and not it is time for me to turn off the lights.