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.
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