Month: February 2009

I decided to tell the story of lunch today, to give a snapshot of life . . .

“Would you like some lunch?” I asked Grandpa after I came back from my bike ride. “Are you hungry?”

“Are you hungry?” Grandpa repeated back to me.

“Would you like something to eat?” I asked, rephrasing the question.

“Yes, I would,” he said. “But not just anything. What do you got? Some of the stuff you feed me I wouldn’t give to a cat.” (He didn’t get that last sentence so clear, but I managed to decipher the gist of what he meant.)

“All sorts of stuff,” I answered evasively. “What do you want?” I typically try to avoid giving Grandpa a run-down of choices because he can never remember them all, and often if given a definite selection he will simply decide they all don’t sound good enough. (If you’ve ever had a little kid who didn’t want anything you offered him for lunch, you know how that goes.)

“Well I don’t know,” he said. “What have you got?”

“Lots of stuff,” I said. “Imagine that you could have whatever you want–what would you pick?”

“Well, that’s not very nice,” Grandpa said.

“Okay, would you like soup or sandwiches?” It is key to keep the question always an either/or and work down to a final selection through a process like twenty questions. I do the same with breakfast, where the first question is hot or cold and then work down from that point. Not only does this help eliminate confusion by limiting choices and what he must remember (though he still can get confused) it also reinforces a sense of inevitability–what you eat has to be hot or cold after all–which helps to avoid the situation where he decides nothing is good enough.

“Yeah, I guess I’ll have that,” Grandpa said.

“Soup or sandwiches?” I repeated.

“Sandwich sounds good.”

“Would like you tuna fish or grilled cheese?”

“I’ll have the Dur-guh,” Grandpa said, pointing at a spot on his pants.

“Grilled cheese?” I prompted.

“No the other one.”

“Tuna fish?”

“Yeah, that sounds good,” he said.

“Okay, I’ll get you a tuna fish sandwich in a little bit.” I turned to go.

“Now wait a minute,” Grandpa said. “I also want a . . . I want . . some nu-hunn and . . . and . . .”

“I’ll get you some drink too,” I said.

“Yeah, okay,” Grandpa said. “What are you going to have?”

“I’ll get you something good,” I said vaguely. Grandpa always wants to drink coffee, but since he has stopped eating well I try to get him to drink as much nutrient drink as possible and typically limit his coffee to two cups when he first gets up in the morning. I buy the “plus” variety of store brand nutrient drink which means in 8 oz. there are 350 calories. However, Grandpa has no clue what “nutrient drink” means and if asked what he wanted he would always say “coffee” so I generally try to keep the issue of drink to simply “yummy and tasty” without getting into particulars.

I made Grandpa his tuna sandwich and cut it into quarters and stood the quarters up on their ends on his plate. As Grandpa’s ability to eat has deteriorated I have altered how I present his food. There was a time when he wanted to eat everything–including sandwiches–with an implement. At that time I switched him over to always using a bowl and spoon because he couldn’t remember how to use a fork properly and if he scooped from a plate he dumped most of the food on his lap. When he was using a spoon I would cut the sandwich into bite sized pieces. Now he is having difficulty figuring out how to use any implement I cut the sandwich into quarters and stand the quarters up on end so they are easy to see and pick up, because if a quarter of a sandwich is laying down, Grandpa has difficulty getting his fingers around it.

After I changed Grandpa’s diaper I put him in the wheelchair and moved him out to the kitchen. Eating the sandwich started out with difficulty. First he thought to pick up the entire plate, and I prompted him that it might be better to pick up the sandwich instead. Then he made moves to pick up several quarters at once, and I suggested it would be better to take one quarter at a time and I rearranged two quarters of the sandwich, demonstrating. Finally, everything clicked together in his mind and he picked up a quarter of the sandwich and started eating. He finished off the sandwich without any further trouble.

“Would you like some potato chips?” I asked after he finished the sandwich.

“Yeah, I guess that sounds good. I would like that,” he said.

So I got out the nearly empty bag of potato chips.

“But only . . . only give . . . just a . . .” he said.

“You only want a little bit?” I said.

“Yeah, the bag is almost . . . not much.”

“Oh, you don’t need to worry about using them up,” I said. “There is a another bag.”

“Oh, okay,” he said, visibly relieved.

He started out eating the potato chips all right, but things quickly went downhill. Perhaps he muddled up taking a drink from his cup with eating the chips, or maybe he just forgot what he was doing. The end result was Grandpa reaching down to the table top, pinching his fingers together and lifting his empty hand to his mouth, studious holding them to his lips, and gently blowing on them. Befuddled, he realized this wasn’t accomplishing anything, and returned his concentration to the table. After a little bit he rediscovered his cup and picked that up for a drink. Then he set the cup back down–this time directly on his plate of chips–and began pushing the plate and cup around the table.

After he finished pushing his plate and cup around he returned to pinching his fingers together and lifting the empty hand to his mouth, saying, “Awww, shit,” every time the movement didn’t result with food appearing in his mouth. This did not improve, even after I suggested he needed to pick up a chip. At this point I realize that he had (for the moment) forgotten how to eat. For a long time now Grandpa has done a lot of “ghosting” where he–very convincingly–uses an imaginary implement to eat. When ghosting he can be amazingly accurate in his movements–scooping from the bowl and inserting into his mouth–except all is for naught because the spoon he is using doesn’t exist. This can be fixed if you insert a spoon into his hand. The ghost eating will then become real. But as Grandpa grows worse there are times when it goes beyond ghosting to where Grandpa is no longer entirely sure of what needs to be done to get food in his mouth. He will clench his fingers and lift his hand from table to mouth in the vague memory that such is how food appears in the mouth–but it is the faint memory of once remember habit, not something that can turn into the actual deed.

“I guess you forgot how to eat,” I said.

“I guess,” Grandpa said. “Something like that. I don’t know what’s going on.”

So I fed him the rest of the chips, and he was agreeable to opening his mouth so I could stick them in. Halfway through the process he dumped the rest of his chips on the table. Typically, when Grandpa no longer remembers what to do with his meal he dumps it on the table. This has meant that we have ended up with a lot of food and drink on the table. I continued to feed Grandpa the chips while he continued to “feed” himself imaginary things. At this point he had his cup in his other hand, but wasn’t paying any attention to it, so the cup continued to list further and further in his hand until he started unconsciously pouring his drink on the table whilst eating imaginary things with the other hand. I had to rescue the drink from him and clean up the mess. Betwixt and between all of this I was also eating my own lunch.

After I finished feeding Grandpa his chips I gave him back his cup and he managed to eventually finish his drink. For lunch he had: one tuna fish sandwich, a few chips, and 8 oz. of nutrient drink (minus a bit lost in the spill). For Grandpa, this was a very good lunch. As you can see, it is something of a project, and one that is almost constantly on the verge of disaster. Sometimes he has a much worse lunch.

I wheeled him back to the living room and moved him onto the couch. I then went back to the kitchen and began working on a roast for supper. Grandpa began calling for my uncle Joel.

“Joel? Hey Joely! Joel!?”

“Yeah, what do you want?” I said from the kitchen.

“Is that you, Joel?” he called out

“It’s me. What do you want?” I called back.

“I want you to say, ‘Hi, Pa.’”

“Hi, Pa,” I dutifully said, moving about the kitchen.

“Good. How are you doing?”

“Just fine. Everything is good here.”

There was a little more disjointed conversation as Grandpa fretted in a muddled sort of way about the general woes of Joel’s life until he went silent again. Then:

“Gene?” (Grandpa’s brother.)

“Yeah?” I said.

“Go lay down.”

Then a little later:

“Ma? Hey mother? Ma?”

“Yeah?” I said.

“I just want you to know I love you very much, and I wish . . .” he trailed off into incomprehensibility.

I decided all his talking meant he was very lonely and went out to sit with him for a bit before I returned to my work. Shortly after I left him to return to putting the roast in the oven, he fell asleep.

I have a little bit of an uncomfortable relationship with answering for other people because I don’t feel comfortable deceiving Grandpa but at the same time I want him to have an answer. Sometimes it is easier because by the context of the situation Grandpa isn’t trying to be precise and is simply calling a name because he wants someone to answer. Other times it is not so clear. It is a fine line to walk . . . not only for my own conscience sake but also because sometimes Grandpa is cognizant enough to realize that I’m not the person he called for. Today I felt I stepped a little over the line because while I typically answer for “Ma” “Gene” or anyone else in my normal old voice, I–in the spur of the moment–began mimicking my uncle Joel’s voice when answering for him. On the one hand it was a bit funny, but on the other hand it didn’t seem appropriate.

. . . And that is a snapshot of life.

There is an unfortunate tendency to dwell on disasters. It makes compelling reading, and often the disasters are the only thing which bestir us enough to write. As a result of this fact, my posts here have tended to be a long litany of one bad thing after another, with most good things simply becoming the silence in-between the posts. All of this has, perhaps, lent a rather skewed perspective on my current life.

Today I will try to balance the scales a little bit by stopping to observe the good. I have written at length in the past about terrible nights I have suffered through–and I am sure I will have more before this whole adventure is out–but what is of note at the present is how much better my nights have been. I currently can almost get an uninterrupted night of sleep, and the situation has so much improved that I can actually set an alarm for myself to get up at a fixed time in the morning.

This is a very drastic change. Before, the nights were so typically bad I had to take every day as it came. You couldn’t schedule yourself to get up at 7:00 AM, or any hour, if you didn’t know if you would be spending half of the night up. Because the nights were so bad I basically tried to get up as late as possible every day–which typically was not very late, either because of Grandpa or my own inability to sleep in. Getting up late is completely anathema to my nature, and all of this contributed to a rather disjointed start to my day and did not help me focus on getting things done. But it really couldn’t be helped (short of becoming super-human) so I had to learn to shrug my shoulders and simply do what I could in any given day.

Even so, I always watched to see if somehow I might be able to get back to a punctual rise in the morning. And that time has finally come.

Unfortunately, this improvement in my personal circumstance is a reflection of the increasing collapse of Grandpa’s condition. My nights are more peaceful because Grandpa is a combination of too exhausted and too incapable to make as much ruckus as before. Most nights now all he has the energy to do is wake once in the middle of the night and make a half hearted attempt to find the bathroom (actually, that is only the first three seconds–the rest of the time is just spent on his hands and knees playing with the carpet, or some such). Such is only the loss of 15 minutes, or a half hour, and in the end there is no disaster, no strife, and I just tuck Grandpa back into bed once he tires himself out. Blissfully, there are no soaked clothes, and no floors to mop up. This greatly improves one’s rest at night.

Again, my day’s are better because Grandpa’s are worse. It is sad to say that, but it is true. Before, I spent a good deal of my time trying to keep Grandpa happy. There was breakfast, mid-morning snack, lunch, mid-afternoon snack, supper, and bed-night snack. And mixed in with all of those was the many trips we would take to the bathroom, and the many times I would have to save him from himself in his trips around the house. Now weakness and apathy has cut all of that down. There are no trips to the bathroom, (save the occasional time we manage to catch a bowel movement in time,) and all the snacks and coffee breaks are gone as Grandpa becomes increasingly un-interested (and unable) to eat. There is no more saving Grandpa from his self-made disasters, because mostly he is stuck on the couch all day. It’s pretty easy to take care of someone who sits on the couch all day, especially when you compare it to someone who used to wander around the house and get into all sorts of trouble.

It is not that Grandpa has become some quiet little thing. I would say he spends about half of the day either quietly occupying himself, or dozing. The other half of his time he sits on the couch and makes a lot of noise. But when you know he is pretty well stuck on the couch you feel a lot more comfortable ignoring his noise, which means I can keep a little more structure to my day.

All of this, I must admit, has been good for me and has led to a marked quality improvement in my life. But I feel sad for Grandpa. About all he can do is sit on the couch, and about all he wants is for me to sit on the couch with him. I feel a bit like the cruel self-centered caregiver in that I go about doing my stuff while Grandpa sits on the couch calling for me. I sometimes ignore him, sometimes call back, and sometimes sit with him. But the simple fact is that I cannot spend my entire day sitting on the couch, so after a few minutes with him I’m back up and away and soon as I get up Grandpa starts calling again. When you have no memory you get lonely very fast.

This is not to say everything will just get easier for me from this point on in. My sense is that we are at a plateau. Things will get bad again, eventually. But if my sense is right, when things get bad again as a prolonged state of living (not just the occasional bad night) it will be because we are in the final, terminal, descent and I will be engaged in the very intensive hospice care. It will be the most brutal part of my care-giving experience, but it won’t be the longest, and the end of that will be The End.

Which is all the more reason to enjoy this present calm, and to be thankful for the days in which everyone is healthy and everything is peaceful.

About two months ago I wrote about a “poop disaster” which involved the living room carpet, and Grandpa walking through his own feces and generally making a mess of things. A charming, pleasant, story, if you recall. Today I have a little addendum of sorts.

A few weeks ago I was getting Grandpa ready for his shower. I had the water on, the bathroom prepped, and was getting Grandpa undressed. At this point I discovered he had done a little bit of poop in his diaper. No big deal–a little bit of clean up with some wipes and we could get on with the shower. I was about halfway through cleaning him up when Grandpa announced, “I have to take a crap.”

Now, from past experience I knew Grandpa’s announcement didn’t mean, “I have to take a crap sometime in the near future. There is no hurry, just whenever we get a convenient moment.” Quite the contrary, “I have to go” means, “I have to go right now.” If he has to go pee, that either means he is presently going, or else he will be in fifteen seconds, which in either case isn’t really helpful, because there is no way you’ll get him to the bathroom. For a bowel movement, his announcement of impending need might give you a little more time–like one minute, to avoid a cleanup job, if you’re lucky.

As it happened, our situation at the time was less than idea. We were in the bathroom doorway–so the toilet was nearby–but we weren’t at the toilet. Worse, I was on my knees behind Grandpa cleaning his unprotected butt and upon his announcement I now had between fifteen seconds and a minute to get that unprotected butt onto the toilet or face a mess all over the place, myself possibly included.

What followed was a mad scramble.

My response is something like, “Aaahhh! Okay, okay. Just hang on a minute! Hang on.”

In those few seconds I realized I would have a big problem getting Grandpa to the toilet in time. When going anywhere on his feet, or doing anything, Grandpa doesn’t–very understandably–want to go fast. Getting him off the couch and into the wheelchair to take him to the kitchen table for supper can take several minutes. The problem now was, I didn’t have several minutes to coach him to slowly walk three steps across the bathroom and turn around to sit down on the toilet. Sometime within those several minutes he would simply start pooping, wherever we were, or whatever we were doing.

The only possible chance we had of getting is naked bottom onto the toilet before everything broke lose was if I manhandled him. In those few seconds I grasped the situation and sprang into action, seizing him from behind under his armpits and propelling him forward. What followed was a quick flurry, as Grandpa tried to grab on to various objects, I tried to keep him from grabbing on to various objects while propelling him forward and at the same time trying to keep myself–as much as possible–out of the line of fire from his behind, in case things didn’t go so well. It’s a delicate art, but Grandpa suffered a bit as I removed him rather roughly from the bathroom doorknob, made him preform a pirouette and deposited him on the toilet.

Elapsed time: Less than thirty seconds. Grandpa securely on the toilet? Yes. Success then, right? Yes!

. . . But wait, (that dawning second when the mind takes fresh stock of its surroundings,) why do I have this very warm sensation on my foot? The very moment you have the thought you know the answer, but still you must look. I look down at my foot. Yep. My bare foot is partly embedded in a warm, moist, a very fresh miniature cow-pie. A good attempt on my part, but by the evidence I was about six inches and five seconds too late. It appears that as I was swinging Grandpa down in the final descent, just before he reached the toilet, he spontaneously let loose. It was a neat pile. It missed his pants. But my bare foot landed halfway in it.

“Gaaaahhhh!” It’s not a scream. It’s more the muffled, teeth-clenching sort of “I knew it! I just knew it!” exclamation.

“What’s the matter?” Grandpa asks, slightly alarmed by my drawn out articulation. “Are you hurt?”

“No,” I said, collecting myself. “I just got poop all over my foot.”

Grandpa laughed.

(I’m not sure if he entirely understood–but I think my strangled exclamation, followed by my sigh and matter-of-fact declaration struck his funny-bone.)

In the end, of course, this was not a big disaster. The bathroom floor is linoleum, so clean up was half a minute, not the several hours required for the living room carpet. True, I’ll probably never forget the warm sticky softness of poop on my bare foot, but–after all–what is life about if not experiences?

So, if anyone is keeping count, Grandpa has stepped in poop with his bare foot (see previous post) and now I have stepped in pooped with my bare foot. Let’s hope it stops there.