Month: April 2007

The need for a cane, the need to wear diapers, the lack of ability to sign his own name . . . each milestone is marked as another march down the the one-way road. Today we marked another milestone. Today Grandpa pooped his pants.

Previously all his troubled has been with urinating . . . getting to the bathroom in time and getting his pee in the proper location. On the occasion of Grandpa’s accident today he didn’t have diarrhea–it was quite firm as usual (he almost never his a loose bowel movement. Since his defecation was as firm as usual I know it wasn’t just an issue of “I moved as fast as I could but didn’t make it.” No, this was the result of some type of confusion, a marker of how Grandpa’s confusion is increasing.

Since Grandpa didn’t explain I don’t know exactly how he ended up as he did. I don’t know if he was sitting on the couch and just had to go and it either didn’t occur to him that he needed to go into the bathroom before he let loose, or else he could have thought he was in the bathroom. Or, equally possible, he could have gone into the bathroom and pulled down his pants but failed to pull down his diaper and so sat on the toilet with the diaper still on and loaded the diaper. I don’t know and it doesn’t really matter because in each case it still comes back to the fact that Grandpa couldn’t sort himself out enough to poop properly.

This doesn’t mean that he’ll poop in his diaper every time for now on. In fact, I expect he won’t do it again for awhile, and the problem will only slowly grow increasingly more regular until eventually not only will he not know when he has to go to the bathroom (poop or pee) but he won’t even know when he is wearing a soiled diaper. He is already shown himself mostly unable to tell if his diaper is wet. Whether it is because he wets himself while he is asleep at night, or from accidents trying to use the toilet at night, more often than not Grandpa’s diaper is dirty by morning. But he is never cognizant of this fact and when questioned will say his diaper doesn’t need changing (and not because he is trying to be deceptive because he will ask for a fresh diaper if in his opinion it needs changing). To avoid confrontation over whether his diaper is wet or not I try to wait for morning bathroom trip where I can more smoothly take his old diaper and give him a new one without having a confrontation where he says, “It isn’t dirty” and I say “It is to dirty.”

Generally Grandpa still takes enough trips to the bathroom that I can scope out his diaper relatively unobtrusively to see if it is clean. As he becomes less cognizant of bathroom needs his trip to the bathroom will decrease (and I think I’ve already noticed this during the night) and this will force me to be more . . . I guess we might say confrontational about his sanitary needs. I’m not sure how I’m going to introduce the idea of me wiping his behind. So far I’ve continued to let it slide, even though I’m pretty confident his often doesn’t do a sufficient job himself. My reasoning is that for thousands of years humanity hasn’t had proper toilet paper and either didn’t wipe well, or didn’t wipe at all, so I’m not going to get all over his case if he’s no longer living up to American standards. But obviously if he is going to start pooping in his diaper and getting it all over his backside he’ll have to be cleaned up properly. Now, that probably won’t be necessary for months, and maybe not for a year or more, and maybe by that time Grandpa will be so out of it that he won’t care. But I suspect it won’t be quite that easy. Grandpa still has a large amount of tension in his life over his modesty. I have to help him with his diapers most of the time. Most of the time now it has become so routine that I don’t think Grandpa really considers what is going on, but occasionally it is as if he remembers and he’ll try to pull down his t-shirt for modesty while I’m helping. And then today when Grandma was trying to help him use the bathroom I came up the stairs and Grandpa said to Grandma, “Quick! Somebody is coming! Close the door!”

So, Grandpa continues to have sensitivities about his modesty, and having your butt cleaned by someone else is an even greater invasion of personal space so I suspect he’s not going to be thrilled (at the very least) when I must take complete charge of his sanitary needs.

Fortunately, for me, having taken part in the diaper changing for seven of my younger siblings being very close and personal with someone else’s poop is an issue I’ve already had to face and deal with. It doesn’t make it pleasant, but at least I’ve already had the baptism of fire as far as it is concerned, and I know all the coping mechanisms. So I took it in stride when I asked Grandpa today (through the bathroom door) if he need any help and he said, “No, I don’t think so. But you can come on in,” and when I did I saw a scene that very much needed my assistance. It was a very good thing that I came in to check on him because if Grandma had laid her eyes on that sight she would have flipped out.

It was right after lunch and I had noticed when I helped Grandpa to the table for lunch I had noticed was seemed to be an odor of poop around him. I took note of it to be investigated the next time he was in the bathroom, so I was very surprised on entering the bathroom to see dark poop streaks on the inside of his diaper. Grandpa was standing there with the diaper around his knees trying to “clean up” and my first thought was that perhaps he had wiped his backside and then decided his diaper need a scrubbing as well and so had scrubbed his diaper with the already fouled paper.

Somewhere in the process of moving to intervene I noticed the turd sitting on the sink counter. Grandpa doesn’t believe in throwing anything into the toilet so when he pulled down his diaper and saw the poop there he decided to fix the problem by taking some toilet paper, roughly scooping it out of his diaper, and depositing the crudely wrapped bundle on the counter his next step was to attempt to scrub his diaper clean. He generally leaves the bathroom with whatever toilet paper he has used to clean things (both those which actually needed cleaning, and many things that didn’t) and tries to find a garbage can to deposit them into. Which is why I’m so glad I came into the bathroom instead of having Grandpa come out to the kitchen with turd in hand and ask Grandma (who was still eating lunch) where he should put it. That would have likely produced a cataclysmic reaction.

As it was, I had the opportunity to handle this in a calmer fashion. “Okay,” I said, taking stock of the situation. “It looks like you need a new diaper.”

“It isn’t that dirty,” Grandpa said, examining his diaper.

“No, I’ll get you a new one.”

I went to the bedroom and brought back a fresh diaper and then helped him out of the one he had one. In the process of the change over another small bit of poop fell out of the diaper onto the floor and Grandpa proceed to clean it up with some toilet paper. He then looked uncertain of what to do with the dirty toilet paper, and fearing he was about to mush it up in a tight ball in his hand I prompted, “Through it into the toilet. Through that into the toilet.”

Grandpa seemed doubtful, but complied. Fearing what he might decide to do with the turd on the counter I quickly picked it up and chucked it into the toilet as well. With all the foul stuff pretty well taken care of at that point, dressing went without trouble. I left Grandpa to wash his hands (and his face, and comb his hair) and went to finish my lunch.

I’ve come to realize that one of my weakness in caring for people is that I have a hard time just being there. If anything needs to be done, or anything needs to be fetched, fixed, or accomplished, I’m ready and willing. But taking care of someone encompasses more than that. Sometimes you just need to be there . . . to sit and do nothing and simply keep the person company. To attend to there person as it were, instead of to their needs. I’m always lining things up in my head to do . . . I’d willing stop and talk or listen to someone if they said, “Hey, I’d like to talk to you,” but it rarely occurs to me to sit around with someone doing nothing and just being there.

I think Grandpa appreciates that. About the only way he can get a thought out it to simply let it pop out when it bubbles up . . . he can’t engage in the more formal communication so he spends most of the day probably feeling a little isolated because no one is just sitting beside him, waiting to answer any question and interpret any event he doesn’t quite understand. It’s hard for me to take stock of this because whenever Grandpa isn’t in need of help for his physical needs I want to run off and get something done that I want to accomplish. But he does want to have someone to listen to him.

Grandpa seemed in a more social mood than usual today. This afternoon he said, “Why don’t you come out front with me.” Usually it is me who suggests going out and often as not Grandpa will decline. But today he suggested we go out, so we went out front where the full afternoon sun was shining. We sat on the front stoop and watched the world and the cars go by. We sat there for 15-20 minutes making small conversation. Then we went inside.

It is at brief times like those that Grandpa can almost seem normal. He talked about how he would never want to ride on a motorcycle and contend with the cars and how his depth perception was bad so he couldn’t tell how low down things were. I asked him if the tall pine tree in the front yard was older than him and he said no, Grandma’s son Paul had planted it (not sure whose Grandma he was referring too, but he didn’t mean my Grandma because she doesn’t have a son named Paul).

After supper tonight Grandpa wanted to talk again. The conversation this time was the complete reverse of the normal conversation we had engaged in during the afternoon. I was sitting keeping him company while he was drinking he coffee and I guess some type of problem came to his mind because he set down his coffee, made an attempt to straighten out the shredded tissue on his place mat and then pointed at the cloth and said, “How do we get this thing working?”

“It’s a place mat, Grandpa.”

“Okay, it’s a place mat. But how do we get things to . . . to . . . line up. Say we have one thing here and another thing here and we want to . . .” he points at different spots on the place mat as he describes but he eventually trails off, probably having not known where he was going with his thought to begin with, and now realizing he can’t reach a conclusion.

But something is bothering him (even if it is just the sensation that something might not be right,) and he tries several more times to articulate some idea about getting things to work continuing to use his place mat as a demonstration peice that does nothing to clarify the muddle for me.

“I’m sorry, Grandpa,” I said. “But you haven’t got it quite far enough along for me to guess.”

“Yeah, I haven’t got it quite far along enough for me to even understand either,” he said.

So we sat in silence a little longer.

After a bit Grandpa smoothed out his place mat again and said, “Okay, I’ll try again. So,” he puts his finger on one spot on the place mat. “Let’s say we have ca . . . ca . . . ca . . . coyotes. Yeah. Okay, coyotes. So they go over this way,” he moves his finger across the place mat to another location. “And they check out this place over here and find that it isn’t commodious. So they say, ‘yeah, okay, whatever,’ and then they go over here to the ca . . . ca . . . caaannnn . . . canvas. So they go to this canvas and they’re laughing at them, but even so they’re trying to help as much as they can and then they go over here . . .” Grandpa moves his finger yet again tracing the continuing route of the coyotes then looks up at me and trials off.

“Anyway, getting back to the main point . . .” he fumbles around with the stuff on the table, separating out the nearby silverware.

“So,” he picks up a knife and draws an imaginary box around the head of a spoon. “So you have a block there and it is a good one and you can use it,” he says.

I’m not making any headway. I know that the story about the coyotes was only language imagery, trying to convey a thought indirectly that he can’t grasp directly. He keeps grasping at words, saying some only to immediately throw them aside, shuffling words and stuttering in-between his short parabolic utterances. Multiple times he gives up only to make another attempt a little bit later. At one point he says, “Ahhh, I can’t describe it.”

“Would you like a pencil and piece of paper to draw it,” I ask.

“No, I guess not,” Grandpa said. “I can’t draw very well, and in any case half the time I don’t understand what I just drew anyhow.” He laughed. “If you know what I mean.”

From everything he said I knew he was concerned about something, something getting accomplished or done, but beyond that I found no touching place with reality. In reflection I see he kept getting stuck on the “Ca” sound, whether that is just his stuttering sound or there was some word he gasped for but didn’t find, I don’t know, but it was the cayotes, the cammodious place, and the canvas.

After another lapse into frustrated silence he spoke up again and said, “So, what do you think? What do you think about anything?”

So I talked a bit about the whether and how spring had finally come, and next week was going to be nice.

Some more silence, then Grandpa spoke up again, seeming to have returned to whatever thought he was restling with. “Is there any law about . . . if you have some problem and you need to go to a doctor . . .” he couldn’t finish the thought, but this time he was hitting close enough to reality that I could make some educated guesses.

“And the emergency room,” I supplied.

“Yeah, the emergency room. And if . . . and if you have the doctor and . . .” but he couldn’t get any further along in the thought and at that moment had to go to the bathroom so he got up from the table, saying, “I’ll be back.”

But that was the end of the conversation. I don’t know if there was a fixed event or question behind Grandpa’s desperate attempt at communication. He may has simply felt ill at ease and wanted to make sure everything was being properly handled. Or, perhaps, his thoughts had drifted back to Grandma’s recent trip to the emergency room and was trying to articulate some concern about handling the insurance. In the story about the coyotes there was definitely a lot about getting things done and handle right, and then there was the laws and the emergency room.

In any case, it is another example of Grandpa trying to communicate. A stranger would think our interaction was madness, but Grandpa knew his story about the coyotes wasn’t literally true. He was trying to use analogy and example to get at something he couldn’t articulate in a direct manner. Unfortunately, it wasn’t successful.

I first saw the book The 36-Hour Day when my Dad first borrowed it from the library, probably about a year ago. It labels itself as “A family guide to caring for persons with Alzheimer Disease, related dementing illnesses, and memory loss in later life.” At the time I had flipped through the book, skimmed various parts, felt I ought to read it, and in the end didn’t make time. The book again cropped up in my life when after I took Grandpa to the doctor’s the last time a nurse called afterward and suggested the book. I didn’t want to offend her so I agreed to check it out of the library, and figured I might make the time to read the book now that I was in the middle of dealing with Alzheimer’s.

I did take another look at the book but after a short glance I decided I wasn’t going to read the book. It is a good book to familiarize someone with Alzheimer’s and I would recommend that any of my readers interested in a more systematic and through detailing of the effects and issues surrounding the disease and care should read the book. I would say the book is of particular use to those who will not be directly involved in the care and need an understanding of what is going on.

If you are the one actually providing the care the value of the book will vary depending on your personality. Myself, after having cared for Grandpa now for over six months I look at the book and find nothing helpful. Having lived intimately with the disease for six months, everything in the book only says what I can already see, only tells me what I already know. After six months it all reads to me like shallow superficial obvious points. Some of what they say I already see in Grandpa, some of it I know doesn’t apply to Grandpa, and I already know where his problems are leading. Flipping through the book, I could see it would add nothing to my knowledge.

But not everyone is like me. When I brought the book home from the library Grandma read portions of the book and found them enlightening. So I guess if you have a hard time understanding why an Alzheimer patient acts as they do the book might help. Ironically, I see Grandma doing some of the very things The 36-Hour Day tells the care providers to not do. And Grandma still has a hard time understanding and accepting many of the things Grandpa does. She seemed surprised to learn some things from the book (things I thought were obvious) and she still can’t stand it when Grandpa moves around the kitchen chairs, carries around the couch cushions, and messes with the magazines.

So the book will give an observer a better understanding, and will help some caregivers, but not everyone.

2:00 AM I wake up. Grandpa is sitting on the edge of his bed, fussing. Usually this is an indication that shortly he is going to get up and go use the bathroom. I realized I need to use the bathroom myself, and if he was going to sit on the edge of his bed fussing I’d go and come back and save myself the effort of waiting on him.

Cold urine greets my foot on the floor.

Oh, no. Not again.

Another step. Another cold wet step.

Is there any place on this floor that is dry?

I quickly fumble the light on, and see the disaster that awaits me.

My worst fear has occurred, in that it appears I didn’t wake up when Grandpa needed me most. The evidence says that Grandpa had to go to the bathroom and when he got out of bed he went to the closet door instead of the bedroom door. He has done that plenty of times before, and I’ve always woken up and directed him to the right door. Tonight, too tired, sleeping too deeply, or for whatever reason, I didn’t wake up and Grandpa was left to his own devices. Finding no hallway and bathroom on the other side of his chosen door Grandpa probably tried to fumble his way to some “solution” only to end up having to go to the bathroom now.

It could have been worse, but on first seeing the disaster it was hard to remember that. The majority of the pee had formed a large lake on the linoleum, saving me from an even larger disaster. But some of the pee had made it beyond to the uncovered carpet in front of the closet door and at the foot of my bed. My bibles and notepaper which I had set on the floor at the foot of my bed after coming home Sunday night were only lightly sprinkled.

It could have been worse if (a) Grandpa had managed to get out of the bedroom and had fallen down the stairs, breaking several bones, or (b) instead of somehow getting most of his pee on the linoleum he had aimed himself at my collection of books stacked along the wall and instead of only lightly sprinkling my bibles had completely soaked all of my writing books, theology books, and fiction books. The first possibility would have been very bad for Grandpa. The second would have been very bad for me. I don’t care very much what clothing of mine Grandpa soils because clothes can be washed. Not so my books. So I looked at the lightly moistened bible covers, and dampened notepaper and saw how close I came to a much worse disaster.

So I cleaned up. The lake of pee on the linoleum required quite a bit of paper towels, but not much effort. The soaked section of carpet may have not required so many paper towels, but a lot more effort to press the carpet dry. Grandpa sat on the edge of his bed and watched. “Boy, that’s quite a mess,” he said.

I held my peace.

After I got Grandpa back to bed I lay in the darkness, thinking. I had been foolish to think I could keep my books stacked in the corner. I had to look at the room and assume everything within reach would get soaked in urine. The books, I decided, would have to go on the top shelf in the closet.

And then I lay awake much longer, thinking about Grandpa’s deteriorating condition. How much longer before Grandpa isn’t able to walk? Six months? We’ll have to get a wheelchair. Where will we get a wheelchair from? Maybe Doug has one. I’ll have to ask him. Should I call him up or wait until the next time he comes over? Once Grandpa has to be pushed around in a wheel chair he won’t be able to sit in his normal spot at the table. He’ll have to sit at the far side of the table, and we’ll have to move one of the easy chairs out of the living room so their is space to wheel him around to the other kitchen entrance . . .

Eventually I went back to sleep.

****

Other little markers of daily life:

–A few days ago I was sitting in the kitchen working on supper and Grandpa stood in the entrance-way, looking at me. Grandma came by and Grandpa said to her, “I can’t tell them apart.”

“What?” Grandma said.

“I can’t tell the boys apart,” he said. “I don’t know which one that is,” he said, looking at me.

“Oh,” Grandma said. “Well . . . just call him ‘Hey You.’ That should work.”

****

Saturday was a bad bathroom day for Grandpa. It seemed like every time he went to the bathroom he ended up getting another pair of pants wet. That evening, after taking care of another pair of wet pants I asked him if he had got his diaper wet as well. Grandpa, pant-less, looked down at the diaper he was wearing and proceeded to feel the outside.

“No,” I said. “Is the inside wet?”

So Grandpa felt the inside of his diaper. “I don’t know,” he said. Then he held open the front of his diaper. “Why don’t you check?”

I did, but he was promptly embarrassed, realizing the nature of his own request.

Grandpa tries so hard, but his awareness and decision making abilities are slipping away.

Grandpa definitely enjoyed listening to Heidi but we finished that several days ago and then it was time to pick something new. Grandma suggested that I read my book to him. I had considered it, but at the same time I wondered if Grandpa could appreciate it. The subject isn’t along Grandpa’s interest and I wasn’t sure if the level of writing might be a bit too advanced. The real reason to read my book to him was if he knew I wrote it and simply was interested in knowing what I had written.

I decided I would give it a try because Grandpa’s brother Doug had a copy he was reading, and when he came over he would talk about it and Grandpa was left out of the loop. If the book was read to Grandpa I thought there might be a chance he might be able to follow any converstion on the subject, or at least feel included. And if Grandpa couldn’t stand the book I could always simply stop reading and pick up a different book.

I felt Grandpa might have no interest because the story subject is foreign to him and because the appeal of the book is its humor and I wasn’t sure he could follow a story well enough to get a joke. But then I also considered the main appeal to Grandpa could simply be hearing someone read, and the content of a story doesn’t matter at all.

It has been interesting reading my story. After having read several other stories out-loud I’m now somewhate sensative to how well a story reads out-loud. Mine does not compare favorably. There is a lot of dialouge that comes in rapid fire for several characters that in writing I didn’t attribute because when you’re reading it to yourself it is apparent who is speaking or replying. It isn’t anywhere near so clear when the story is read out-load, espeically since I can’t dramatize the different voices to distinguish them. To compensate I’ve had to insert dialouge tags as I read to give Grandpa a chance of following the flow of the story.

Then there is also the problem that I’m not very good at verbally giving the inflection of a joke. If it is read silently the person can supply the need tone and rapport. When read out-loud, I have to supply it and I have great difficulty rising much above a monotone. If you read a joke in a monotone it . . . kind of loses its zing. Not that I think Grandpa is paying close enough attention to realize, but I’m the one measuring the quality of the reading.

When I started reading the story to Grandpa I wondered if he would get any of the jokes and laugh at even one. We’re up to chapter nine, and actually he has laughed at one joke (the most obvious, unsubtle, and simple joke, but still . . .). Maybe two. I couldn’t tell if he actually laughed the second time. Given this ratio he might laugh (okay, it rates morea chuckle) one or two more times in the length of the novel. But more importantly he doesn’t seem to be bored out of his mind.

What Grandpa first laughed at was early in the novel when Ben came to town for help and the mayor says to him, “You must bring your eye-witness account to the king so he will be moved by tender emotions and come to our aid. You must fetch the army of the king, Ben. Just like your parents told you. And never fear. Let not a concern touch your empty and innocent mind.”

Grandpa got that one.