The Embers Are Dying

For the record, here is a summarized account of the progression of Grandpa’s condition.

Eating

The big milestone in Grandpa’s eating has been a recognition that his inability to eat normal food has progressed to the point where he needs special food. As I have often said, things do not progress neatly with this disease. An Alzheimer’s patient doesn’t go from walking one day to not walking at all the next day, or from eating normal food always to not eating at all. The slow progression is like a form of torment for the victim as the lose their ability one little bit at a time and they struggle futility to hold onto what they have.

With some things, like talking, you can only watch as the victim’s ability deteriorates. There is nothing you can do. But for other things as the disease progresses there are steps to take when the victim reaches certain points in progression. For example, there comes a time when it is time for the Alzheimer’s patient to start wearing diapers. That point as long passed here, but there was the awkward and delicate time when we had to introduce the fact to Grandpa. The trick is knowing when something has to be done.

In the case of eating, when I first came to live here Grandpa ate everything we ate. He found a few things difficult to chew with his false teeth so he would spit them out, and I would cut his food up for him so he could eat it, but beyond that there was no question that he would eat the same meals as the rest of us. Since then, the situation has slowly grown worse.

When I first came the influx of my better cooking and attention to Grandpa’s needs made him gain weight from about 125 lbs. to 135 lbs. But then, subtly, things began to change. As a subtle change, I couldn’t point to a particular time when I first noticed it. But I began to notice that Grandpa was having increasing difficulty using his for, he was spitting more and more of his food out, and his attention span was becoming so sort that he was having difficulty finishing all of his meals. This progressed to the point where I began to find it a bit alarming. It was one thing for him to struggle to eat and make a mess in the process if in the end he consumed all he needed. It was another thing entirely if he was no longer eating properly.

My concerns were confirmed when a few weeks ago Titi commented that it looked like Grandpa had lost weight. A weighing only confirmed the fact–he was back down to around 125 lbs. It was time for a change in Grandpa’s diet. Since it seemed like Grandpa would spit out anything of differing texture in his food, my first thought was that it was time to go to pureed baby food. But at the grocery store I started to have second thoughts. My instincts said Grandpa wasn’t quite so far gone that he would find eating the bland puree of baby food acceptable. Though chewy things, crunchy things, and any other noticeable lumps would end up spat out, he still wanted taste and something. So I went to the halfway point of junior food which I found fit him just right. A junior food meal of chicken and potatoes with a cheese sauce had taste and substance without anything standing out enough for him to think it needed to be spat out.

When I fed Grandpa the junior food it occurred to me that it basically looked like canned food. Normal canned soup is too thin (I think) to substitute for all meals, and Grandpa requires variety so I knew feeding him canned ravioli (which he likes but I loathe) wouldn’t suffice. But there are “select” brands of canned soups which are substantive enough with meat, potatoes, and vegetables to be more stew that soup and constitute a solid meal. Further, there is a wide selection of such soups so Grandpa wouldn’t have to eat the same thing over and over again. My suspicion turned out to be correct–Grandpa could eat these soups and they now make up his supper for about half the week. The rest of time he can still (for now) eat what we eat.

Bathroom

I have long chronicled Grandpa’s continuing problems with the bathroom. There has been no drastic change, only the continuing slow progression. It is striking how similar Grandpa’s bathroom competence (in some ways) is to a toddler. When he needs to go to the bathroom now he will usually say, “I need to go to the bathroom” or something similar, to get someone to take him there. That is, if he can recognize and articulate his need to go to the bathroom. Sometimes he will become agitated, or speak in an incomprehensible manner when he needs to go to the bathroom. You ask, “Do you need to go to the bathroom?” and he will then say, “Yes! I have to go bad!” . . . but somehow he was unable to articulate it without being asked, or perhaps unable to recognize the source of his agitation without being asked. Because of this, I’ve become something of a broken record, constantly asking him, “Do you need to go to the bathroom?” If you fail to ask him, and he fails to recognize and articulate his need, something drastic will happen. Such as walking to the end of the hall and peeing in a corner, or grabbing the nearest garbage can and peeing in that.

Another development is that I now set him on the toilet whenever he wants to go to the bathroom. Before he would always want to pee standing up–and that was more and more often ending in some form of disaster. About a month ago I somehow managed to convince him that sitting down was acceptable. The operation is thus: When he needs to use the bathroom I guide him to the bathroom, position him in front of the toilet, pull down his pants, and lower him onto the toilet much as you would a little child just learning how to use the bathroom. This basically eliminates all decision making from Grandpa and eliminates the opportunity for disaster. Obviously it also requires that I be much more involved in his bathroom usage. Middle of the night trips he still mostly manages (or fails to manage, as the case may be) himself. This means about half the time he comes back either without his diaper or completely naked and I must wake myself up, dress him, and check the bathroom for any necessary cleanup. Ideally, I would take him every time he needed to go to the bathroom, but during the night it is exceptionally difficult, and even during the day I don’t catch him every time.

Some notable incidents:

–Grandpa undressing and climbing into the shower to take a leak.

–Grandpa washing his hands in the toilet.

–Grandpa peeing in the bathroom sink.

–Grandpa washing his soiled bottom with the hand-drying towel (and on various occasions with a washcloth)

The next great milestones are (1) I really need to start wiping his bottom and (2) I really need to start being the one to bathe him. On matters of both dignity and practicality these are troublesome. On dignity, having someone else spoon feed you and someone else wipe your bottom are probably the two most undignified things that can be done. Having someone else bathe you probably comes close behind and I’m not eager to confront Grandpa with either of these. Then, doing those things will probably double or triple the amount of time I must spend helping Grandpa with those tasks. Presently, I will put Grandpa on the toilet and then leave him be or get his shower water ready and then leave him be until he wants to get out. But if I must stay around until Grandpa finishes his stay on the toilet, or bathe him in the tub myself–that takes a lot more time.

Walking

Grandpa’s walking ability has taken a noticeable decline, spurred on by his back and hip problems. Not only does he have trouble walking, but he has difficulty knowing where he is walking to. Often I end up “Driving” him, especially in the later portion of the day. This involves me standing behind him, putting my hands in his armpits, picking up his weight and propelling him forward. Again, much like you would help a toddler just learning how to walk . . . except Grandpa is about as tall as me and weighs 125 lbs.

Normally, I’m just supporting a portion of his weight and giving him added stability and a sense of security as well as guidance as to where he should be going. But sometimes when he is feeling especially poorly I will support a lot of his weight. Once he simply picked up his feet and I carried him over to the couch. This is only going to become increasingly common, and fortunately I don’t find him too heavy.

He also has taken to crawling around the house.

Talking

Grandpa, more often than not, is verbally incomprehensible. Maybe he is about 90% incomprehensible for most people. I have a hard time being a good judge of this because I’m pretty good at reading between the lines and contextualizing his attempted communication to get the gist of what he wants. So while his words often (in and of themselves) make no sense I often can still get the heart of what he wants. Someone else, on the other hand, would be entirely lost.

Misc

Grandpa is having increasing difficulty recognizing people or remembering their names. The real marker of decline in this regard are the few times Grandpa has been uncertain about Grandma’s name, or unable to remember it. These, so far, have been rare blips, but that they have occurred at all with Grandma’s name is indicative. It shows how far the fuzzy edges in Grandpa’s life are progressing.

Recently, he has also started calling for his brother Gene who was his favorite brother growing up. He can do this incessantly without having any apparent reason (beyond a sense of agitation). I once asked him why he called for Gene. Grandpa said, “I don’t know. I know he isn’t here. I guess just because he is my favorite brother.” I think Grandpa is right on the cusp where, when he stops and thinks about it he knows his brother Gene isn’t here, but that he has deteriorated to the point that it feels like his brother should be present. Sooner or later, he won’t even be able to recall that Gene isn’t around.

****

Such is a very quick update of Grandpa’s condition. Gotta go.

This entry was posted in Uncategorized. Bookmark the permalink.