Author: Rundy

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.

Below is a link to a NYT article on people trying to live with Alzheimer’s. The observations in the article line up with my own. If you read the article you will see there is one man profiled who still retains his short term memory but is losing his motor skill rapidly. Then there is a lady who retains her motor skills better but has completely lost her short term memory. Grandpa isn’t so much to one extreme or the other, but those cases reflect how Alzheimer’s progresses differently for every individual.

I would say Grandpa has lost probably short term memory and motor skills in equal measure. He hasn’t lost either entirely, but both are getting progessively worse.

Here is the link: NYT Article on Alzheimer’s

How hard is it? Some people think taking care of Grandpa (and Grandma) is a particularly difficult task. Maybe even an overwhelming task unlike that which normal people must face.

I don’t view my situation that way. I have always thought my situation bears a very close resemblance to being a mom, and being the mother in a house. My present responsibilities requires the same skills and grace of motherhood, and perhaps less than is required of many mothers, since I have only Grandpa to tend and many mothers can have at least three little children in need of having their butts wiped, their noses blown, their dinner prepared, tucked into bed, watched out for, questions answered, and everything else in the long litany of things required by little kids. From little infant on up, for every one of their needs there is an eerily corresponding one for Grandpa.

Which, of course, is not to say it is all easy. Any mother can testify that it isn’t all easy. But it is life, it is what must be done, and it is what mother’s have done for generations. To do it rightly does require a large gift of grace, patience, and peace . . . but all are equal in need of that.

It can be a wearying job, as all mother’s can attest. It is a full time job, with very little time for oneself. There is always supper to be made, or else breakfast to be fetched, lunch to be made, or innumerable snacks (or cups of coffee for my charge). There are dishes to be washed, the kitchen to be cleaned, grocery lists to be made, groceries to be bought, diapers to be changed, clothes to be washed. Yes, the tasks of motherhood are many, and mine are no greater and no more difficult.

So, I never think anyone should consider my job any greater or more difficult. That is not to disparage motherhood, (quite the contrary!) but rather to put things in the right perspective. It is very humbling, and proper, to realize one’s tasks are not unique, but rather the very things that some labor at all their adult lives. Rather than becoming fixated on the difficult things that I must do, instead I can in this particular unique time in my life reflect on what mothers do and what sacrifices their calling requires of them and honor them for it, recognizing a little more clearly the price they willingly pay as servants and mothers of a family for many more years than will ever be required of me.

It is a good experience for me, I think. Obviously, I will never fully experience all the trials of motherhood. But as it is unlikely that I will spend most of my life in the role of primary care-giver that a mother occupies, it is good for a time to, as it were, “walk a mile in those shoes” and come to have a little more understanding, compassion, and respect for the burdens and trials, and strength required for motherhood. I’ll never be a mother (and let’s face it, I don’t have enough womanly qualities to even come close) but for a time I have the opportunity to be like Mom, and perhaps learn something from that service.

****

Unrelated random scene attached:

As I’ve said before, the combination of Grandpa being unable to find the right words and his confusion make for some very bizarre conversation.

Tuesday night was a bad night. Grandpa woke up about 1:30 AM to go to the bathroom but when he came back to bed he didn’t promptly fall back to sleep like he normally does. I lay in my bed and listened to him sigh and stir and move about on his bed and act restless. I had a feeling I knew what was coming, and sure enough a little late I heard the sound of the dresser drawer opening.

I flicked on my bedside light. “You want something, Grandpa?” I asked.

“Yeah, I guess so. Something to put on.”

“What?” I looked at him, and he was still properly dressed for going to bed.

“You know, something to split your palm and cover your modesty.”

“Are you cold?” I asked.

“No, I’m not cold,” he said.

“Well,” I said, “the only thing you don’t have on is a pair of pants, and you don’t need to wear pants to bed. I don’t understand what you want to put on.”

“Never mind,” he said, somewhat impatiently. “You’ll have to ask your mother about that. I mean, your wife.”

So I turned the beside light back off. I wasn’t feeling really agreeable that night. If I’m feeling particularly long suffering I will turn my beside light on and sit up in bed and keep him company, watching him as he does various things and try to offer him a sense of help and support even while I occasionally prompt him in the direction of bed. That night I didn’t feel like it, so I put a T-shirt over my eyes and decided I’d just lay there until he finally tired of looking for the something that he didn’t even know what was.

I think he sensed my answer was a little bit more abrupt and final than I usually am because as he continued to fiddle around with things in the dark he said a little later, “Well, I guess Arlie doesn’t want to have anything to do with this.” (Arlan has lived with them much longer, so unless Grandpa is thinking really hard I’m covered by the catch-all “that-boy” name of Arlie).

I told him, “Grandpa, if you can tell me what you want I’ll be glad to help you.” But I still didn’t sit up in bed and turn the light back on and keep him company in his hunt to fix the unknown problem. So I got to listen to him turn restlessly in bed, sighing. Then sit up and itch his head very loudly. Then begin to fiddle around with and fumble with things on top of the dresser. Then knock my clock onto the floor. (I turn the light back on and pick that up, then turn the light back off.) Finally Grandpa gets out of bed and turns the bedroom light on. Checks the room out. Finally turns the light out and leaves the room. Goes to the bathroom, checks the hall. Comes back to the bedroom. Turns on the main bedroom light again, comes over to his bed, then goes back to turn the light off. Then goes back and gets into bed.

He repeats the entire agitated procedure maybe three or four times. Generally it consists of itching the itches that need itching, trying to set the bedroom to right, finding glasses, going to the bathroom, trying to determine if anything needs to be set right or fixed in the bathroom, then going (probably) to check the time on the stove clock in the kitchen and then coming back to the bedroom and trying to get everything right for bed again. Since he has no defined goal, no end he is trying to reach except peace in his mind, and no logical method I can help him along, it is pretty much an infinity loop until he is either mentally or physically exhausted and simply goes back to bed. Unless you are going to authoritatively order Grandpa to stop and go to bed (which I don’t) you simply have to wait it out.

So I lay in bed and waited, keeping track of his activities by sound, until somewhere around the four circuit he finally stopped in the middle of the bedroom and said, “Well, do you think you could help me get all these things set to right?”

“Sure,” I said, getting the cue and sitting up. “I’d do anything if you’ll lay back down and go to sleep.” So I removed the bathroom towel that had made it in onto his bed (neatly folded back up) and the box of tissues that had also migrated to his bed, straightened out various other sundry disorder, approximately straightened out his covers and folded them back. Then he willing got into bed and I covered him up. It was not about 2:30 AM. Grandpa got up to use the bathroom several more times that night, but he went back to bed promptly after them all.

I’ll start by saying that I don’t really think that with Grandpa and his illness that there is a “edge”–some clear cut breaking point where before and after he is starkly different. The only edge like that would be a real physical edge . . . the edge of the stairs which he goes tumbling down and breaks his bones. Short of that type of edge, there aren’t really edges in his decline.

But it does feel as if there will be, or there are. It feels like one day everything will change and instead of things getting slowly worse some vital cog will come loose and life will be completely altered. I guess perhaps this feeling springs in part from an inability to imagine how some things will go slowly. How can you slowly forget how to walk? How can you slowly forget how to fee yourself? It seems as if those are the type of things you either have or you don’t. So you begin to imagine that one day Grandpa is going to wake up and not remember how to do them, and then we’ll be beyond that “edge.”

When I reflect on what Grandpa is losing what strikes me right now is how much more he has to lose. I don’t first gasp at how much he has lost, but how much more he has to lose–one inch at a time. When you are there helping him through it, that is what it feels like: one inch at a time. Every bit of his ability is extracted from him like one slowly removed tooth. One begins to look ahead and see how many more slow painful inches Grandpa has to endure.

For all of the troubles Grandpa daily endures and which I have chronicled here, I am struck by how–with all that he has already lost–I can still largely interact with him like a normal human being. He is often a very confused, but he is still one largely cognizant that he is sick and failing and the better half of his mind is trying to deal with it. The better half of his mind reaches out to me and together we try to deal with it.

I guess the very big thing I see him still having–and which I think is going to be very sorrowful to watch him lose–is his self awareness. He still knows that he is a husband, a father, a grandfather, and even a great-grandfather. He may not be able to name off all of his twenty-five grand-children or four great-grandchildren, but he can still recall when he is told and re-reminded. He is still capable of recognizing his failures, of being sorrowful over them, and ashamed. He is still capable of knowing that others are tending him, making sacrifices for him, and he is still capable of clearly expressing his thanks for service rendered.

Yes, it is painful to watch him struggle to speak, and see him knowing that he cannot speak clearly. Yes, it is painful for every day to have Grandpa call me into the bathroom and practically beg me to show him how to not pee all over himself and all over the bathroom. Yes, it is painful to watch Grandpa mutter and curse at himself as he tries to make his feet work properly when they will no longer walk him across the room.

It is very painful, but in a sense the pain now is a reminder of how much he still has. So long as we still have this pain it means that Grandpa isn’t a vegetable sitting on the couch staring blankly ahead and drooling. The pain we daily face now is a reminder of how far away we are from that end, and how much further we have to go, one inch at a time.

Grandpa no longer being able to use the bathroom always felt like one of those edges . . . a point beyond which things would feel so forever different. Now that we’ve progressed to somewhere around the halfway point through that it no longer seems quite so striking. Now my thoughts turn to Grandpa and his ability to walk. What is it going to be like to slowly become unable to walk? What should (and can) I do to help?

His failing ability to walk is raising its head like an ugly specter. On his good days he is still good, but on the bad days it is bad, and he is getting worse. He seems to have the worst trouble when he is trying to go somewhere in particular and do something–his perennial trouble being sitting down on the couch. He can often get to within a few steps on the couch and then he looks at the couch as he prepares to sit–and then his ability to walk deserts him entirely. It is as if his feet become nailed to the floor and he will struggle ineffectively for several minutes, sometimes eventually coming unstuck so he can totter the last few steps. Other times he simply lunges forward and grabs the couch with his hands. It is getting bad enough now that I sometimes have had to help him. At a hundred and thirty-two pounds he is light enough that I could easily pick him up and bodily carry him, but that is less than ideal, both because of his bad lower back, and like all old people he loathes to have his feet off the ground. I have found the best solution so far is to wrap one of his arms firmly around my neck and–since with his stoop I stand taller–when I stand I pick him up every so slightly, taking some of his weight off his feet and giving him the very clear sensation that he is being very firmly supported. Simply taking his hand or locking arms with him to give a little support is not anywhere near enough. When his legs stop obeying him properly he becomes afraid–afraid of falling and not being able to move–and it takes much more than a little bit of encouragement to get him through.

He fails regularly now, and in such circumstances it is a great mercy that we have wall-to-wall carpeting. The cause for his falls are various, all centered around the fact that his sense of balance and coordination has severely deteriorated. He can try to bend over and pick up a bit of garbage and not make it, try to sit down on the couch and not make it, or simply lose all sense of balance. I have seen him standing perfectly still and suddenly almost pitch over backward like a felled tree. Short of chaining him to a bed or chair, there is little I can do to eliminate this risk. The effects of his Alzheimer’s’s makes him very restless which gives him the need to move about, even when he is exhausted.

Even Grandma has noticed his increasing trouble on this front and so we picked up a walker from a family member. Unfortunately, I don’t think it is going to help at all. Grandpa very easily (intuitively, in fact) grasps how to use a cane. Not so the walker. He has to think about how to use the walker, and that requirement pretty well renders it useless when he most needs to use it. His innate tendency is to drag it along behind him, and when he does push it properly in front of him the act of maneuvering it through doorways is an impossibility.

Further, the walker can’t even help Grandpa when he is at his worst. One evening not too long ago he decided to practice using it. That evening he was having particular trouble walking, so I guess maybe he thought to see if he could limber himself up on the walker. It didn’t work. He would push the walker along in front of him, and after about six steps his brain would get out of gear and his feet would stop moving. It was a brain freeze, and the fact that he had a walker didn’t help. He was stuck standing there, and about all that would happen is he would continue to slowly slide the walker forward until he was stretched out, his feet rooted in place and leaning on the walker far in front of him. I could get him unstuck by physically bending his knee for him and moving one foot–and then he would walk another six paces or so, only for his brain to seize up again. If he struggled mightily with his own body he could eventually (as if in a desperate gasp) finally get his own feet unstuck–but the walker added no more support or help than Granpa already got from leaning on the walls and his cane.

It has become quite clear to me that the walker isn’t going to be any help at all with Grandpa’s real problem. And I don’t know what we’re going to do as his trouble only increases. I know it is far far better for him to move about on his own feet, and when he stops it will be a big hit against his health–physically, mentally, and emotionally. But on his very worst days it is so painful to watch him struggling and fighting with his own body trying to make it remember how to walk that I wish we just had a wheelchair in which he would be content to sit and I would push him wherever he wanted to go. I guess sometimes I just wish he would stop fighting and rest, so I wouldn’t have to watch him struggle.

But, as I have already observed, when he does cease to struggle it will only be a sign of how much further away he has fallen.

****

Unrelated slightly absurd incident from today:

Late this afternoon Grandpa started to get undressed in the living room. “Do you want to take a shower?” I asked.

“Yes,” he said.

So I got the shower water to the right temperature, (had him test it several times to make sure it was right for him,) then got him a washcloth and a towel. I made sure he got completely undressed, then told him the shower was all ready, and call if he needed anything more. He said okay, and I shut the door left him in the bathroom to tend to himself.

I came back a few minutes later and could tell by the sound coming through the bathroom door that the shower stall door was still wide open. I supposed he had probably simply forget to close the stall door when he climbed in. I opened the bathroom door to swipe out his old diaper and replaced it with a fresh one for him to put on. At least, I tried too. Grandpa was standing in front of the bathroom door. He had the sink faucet going full blast along with the shower, and was lathering up his hair vigorously at the sink. I’m not entirely sure what soap he was using. It could have been the liquid hand soap.

I took this in stride as Grandpa will often decide to take a sponge bath at the sink (not sure if this is something he did often growing up and as an adult, but it seems to hearken back to something in his past). It seems he had either initially intended to only take a sponge bath and had only gone along with me with the shower at my prompting, or else after I had left the bathroom the first time he had laid eyes on the sink and immediately forgot about his plans for a true shower and had settled for a sponge bath instead.

Whatever the case, it was something of a scene to open the door to great billows of steam and find Grandpa standing in front of the sinking, lathering up his hair for all he was worth.

I don’t think he ever did end up using the shower. A little later I checked back in and at that point he had moved on from his hair and was cleaning the sink for all he was worth. So I squeezed into the bathroom and shut off the shower. A little later he came out of the bathroom and I helped him get dressed.

Snippet 1:

Saturday night Grandpa had another bedroom-bathroom disaster. I somehow was exhuasted enough, or he was quiet enough, that I slept through the unfolding disaster and only woke up to face the results.

I first started waking up when Grandpa sat down on my bed to lay back down. Dragged into a half-awake state by the sensation of someone almost sitting on me, it felt like too much work at that moment to explain to Grandpa that he was on the wrong bed. So I lay there waiting for him to realize he had made a mistake. He seemed to realize something was wrong with the bed–a funny lump or something–because he kept trying to re-situate himself. Finally, seeing as he wasn’t going to quickly realize his mistake and get up, I made some groggy comment about how he would have more room in his own bed.

Grandpa made some comment, (probably about his mistake,) laughed, and got up and moved to his bed. When I am awake enough, I always try to tuck Grandpa in for him because while it makes me a little more uncomfortable to get out of my nice bed I actually suffer more disturbance if I must lay listening to him wrestle and mutter at his blankets for ten minutes as he tries to cover himself. However, that night I was still only half away so I lay listening to him mutter and struggle with his blanket. I reached over with one hand and turned on my bed light, hoping that would be help enough, but the light shone in his eyes and he asked me to turn it back off.

In the darkness once more, I heard him say, “Ahhh, it’s all wet.”

Okay . . . time to check on him, I thought. Groggily, I sat up in bed and swung my feet over the side and set them on the linoleum covered floor.

. . . And set them right into a cold puddle of urine. That will wake you up quickly. Eeeyaaah, I think, (or something like it,) and reach over to turn on the light, wishing I had something handy to wipe off my wet foot. A good look at the room shows it has become a disaster area. The sheet is half off Grandpa’s bed, and his blanket is half on the floor and various items are scattered about on the floor. A quick check confirms that his blanket is only wet where it has fallen on the wet floor–Grandpa only peed all over the floor, not all over his bed. One small mercy.

Next I try to discover the extent of the damage on the floor. Grandpa’ winter hat is lying on the floor, and his glasses are wallowing in another puddle of urine over by the commode. After picking my way about I manage to determine that it seems all the pee has been contained on the linoleum in the bedroom–he never made it out into the hall to track his trail of wetness to the bathroom. Time to move into damage cleanup.

I wadded up the slightly wet blanket with the other wet clothing items and chucked them into the corner. I took one of my spare blankets and gave it to Grandpa. I put him back to bed, cleaned up the floor, and cleaned up his glasses.

I’ve now decided to keep a roll of paper towels permanently in the bedroom. I don’t want to have to walk all the way to the kitchen when I need something desperately for cleanup.

Snippet 2:

Sometimes Grandpa is completely unaware of his difficulties, but I am still a little surprised by the other times when he shows such clear self-awareness of his problems. Yesterday afternoon Grandpa was trying to communicate with me and was having the usual difficulty . . . he would use the wrong words, or sputter and stutter and be unable to get any words out. Finally he stopped and said, “I don’t know how anyone can understand what I say.”

He knew he was sitting there and speaking nonsense. What it must be like to open your mouth and know that all that comes out is babbling foolishness that means nothing–to see yourself so clearly and be unable to do anything about it.

Snippet 3:

Last night was a tough night. It is actually easier for me if Grandpa has an accident than if he has a hard time sleeping. If he has an accident I can put him back to bed, quickly clean him up, and get back to bed myself. If he gets agitated in the middle of the night I can only wait until he exhausts himself again. Thus it was last night. He initially woke me, and got up, to go to the bathroom. For nearly the next hour he was up and down, in and out of the room, turning the light on and off . . . all trying to take care of various things . . . or find something that needed taking care of. Since he was simply agitated . . . he didn’t know what he wanted or need, and if he did latch on to something and I resolved that problem he simply moved on to another, I had to ride it out until he finally tired himself and went back to bed.

These type of situations are what take on a nightmarish hue to me. When there is a midnight mess that needs to be cleaned up I’m in control of the situation and while it might not be fun I can at least clean it up in my time and go back to bed. But when Grandpa is simply agitated and five minutes runs into ten, and ten into fifteen and fifteen into half an hour . . . you start wondering how much of the night this is going to take, and imagining being up all night watching Grandpa go about trying to set things right. It’s a situation where I’m not in control . . . I can “fix” the situation, and I can’t ignore it. I can try to prod Grandpa in the direction of bed, but mostly I must simply sit there and wait for events to run there course.

Now, onto the main story:

This past Thursday I took Grandma and Grandpa to their “normal” doctor for their regular checkups.

Grandpa’s appointment was a non-event. He had gained five pounds from the last time I took him in, and since he is underweight that is a good thing (and make me feel pleased that at least I am feeding him well). His blood pressure was back down to only 7 points above what the doctor wanted, which wasn’t worth doing anything about, she said. And that was that. Grandpa was hale and hearty . . . except for the fact that his mind is falling apart.

Which is the same thing they said last time I took him in three or four months ago. Grandpa refuses to take pills for a long period of time, so there is really nothing the doctors can do for him. Last time I took him in they gave him a battery of tests to see how advanced his Alzheimer’s was–I thought the test was interesting. It showed that, at that time, his “time sense” was completely shot (year, time, age, etc) but that his sense of place was still intact. There were other aspects of the test as well, and I was interested to see how well he did on them again, now three months later. However, the nurse told Grandma that she wasn’t going to test Grandpa anymore. He was only going to get worse, and there was nothing they could do for him. It is probably for the best . . . the testing only embarrassed Grandpa and did nothing for him, and there is no point to make him suffer it just so I can track his slide into oblivion.

And really, for the same reason it is pointless to take Grandpa to the doctors. It is a source of stress, agitation, and embarrassment for him, and they can do nothing for him. He body is, more or less, hale and hearty and they can do nothing for his mind. Why take him to the doctors so they can check his weight and blood pressure?

Even Grandma is agreeing with me now, so this was probably the last of Grandpa and the doctors for a long while. Grandma, on the other hand . . . there are a lot more doctors in her future.