Blog

We need to back up a bit for this story. The days of yester-year when I took Grandpa to the bathroom are now mostly behind us. He uses the toilet for maybe 1/3 of his bowel movements, and rarely when he pees. Not only is his limited mobility a problem, but his awareness is also failing. Maybe half of the time (or more) he doesn’t even realize he needs to go pee. I have a set schedule for changing his diaper and usually it is soused (Grandpa’s preferred word for his wet condition) without him having complained earlier about a need to go. Sometimes he is cognizant of needing to go, but the increasing failure of getting him to the bathroom in time to urinate means I have abandoned the attempt unless he makes a specific request. There is no point in dragging him to the toilet if he has already peed himself by the time we get there. Typically, if he does realize he needs to go pee, he realizes it for one minute, starts to head “somewhere,” forgets what he was doing, pees himself, forgets he did it, and life goes on. It’s not ideal, but at this point in Grandpa’s deterioration, we’re far beyond ideal. It was something of an effort to give up dragging Grandpa to the bathroom–after all, not wetting yourself seems like a fundamental issue of decency–but it came to the point that the bathroom failures were so many that it began to feel pointless, and I discovered that there was actually more peace in the house if I stopped trying to fight that lost battle.

Since I’ve surrendered to the diaper for Grandpa’s urinary incontinence life has been pretty peaceful on that front. He rarely gets his clothes, or anything else, wet. Life is much more simple and less frustrating. The last time we had a pee disaster was a few weeks ago, and that was the first in many weeks. Grandpa had woken up in the morning needing to go to the bathroom (nothing unusual) and had sat up and promptly started to go (nothing unusual again). But somehow his diaper was badly arranged and so the pee leaked out the side and started getting his bed wet. Grandpa stood up, and the pee promptly started gushing down his leg to the carpeted floor.

I woke up to the sound of splish-splatter-splish-splish. My internal disaster alarm went off and I leaped out of bed with the exclamation of “Ah! Ahhhh! Ah! Ah! Ah!” Rushing around Grandpa’s bed I quickly adjusted his diaper to stem the tide.

“What’s the matter?” Grandpa asked, a bit perturbed by my exclamations. “Did I get some in your eye?”

“No,” I said, still kneeling in front of him and holding the diaper in place. “I just don’t want anymore more mess to clean up than I have to.”

I was laughing to myself to rest of the day over the question, “What’s the matter? Did I get some in your eye?” It was the most peculiar concern given the situation, and yet in an absurd way, there was a certain logic about it.

Anyhow, the issue of pee problems has largely receded. Poop has been a slightly different matter. It is more work (and more unpleasant) to clean up Grandpa’s soiled bottom than to get him to the toilet to do his bowel movement and simply wipe his bottom afterward. The problem is that Grandpa has maybe a 50% ability to recognize that he needs to do a bowel movement. Some of the time he is simply agitated over something, and he doesn’t realize the “something” is his need to go to the bathroom. Of course, there are plenty of times when he is agitated over something else, or nothing at all, so guessing when Grandpa’s agitation is over the need to do a bowel movement is something of a fine art. The last thing you want to do is drag him down to the bathroom and sit him on the toilet only to have him do nothing. Of course, the last thing you want to do is not take him to the bathroom and end up with a dirty diaper to change. One could get obsessive about the whole thing, but I try to not spend too much time on it. I try to keep an ear tuned for Grandpa’ agitation and if there seems a good chance it is from a need to go poop, I will make the suggestion.

A couple of weeks ago around breakfast time Grandpa was wildly agitated. I sort of suspected he might need to use the toilet, but his agitation consisted in him bellowing at the top of his lungs for “Ma!” and wrestling with the kitchen table. He was in such a fit that I wasn’t going to man-handle him down the hall to the bathroom unless he agreed that was where he need to go. Finally he stood up and declared, “My a**hole hurts so bad!”

I said, “Well, maybe we should go to the bathroom then.”

He looked at me questioningly and said, “You think so?”

“Yeah,” I said. “I think we should.”

So we started to trundle toward the bathroom and after maybe two steps Grandpa says, “Oh, shoot! I just did something! I don’t know what it was, but I did it!” At which pointed I propelled him–pronto–into the bathroom and got him onto the toilet. He had done a portion in his diaper, but he did a lot more in the toilet.

Such is an example of the very confused and disconnected relationship Grandpa now has with his own body. Sometimes he understands his body is telling him something, but can’t make sense of what it is saying. As I mentioned, we only have about 1/3 success, but I don’t sweat it. Sometimes he doesn’t even agitate before pooping himself, so there would be no way I could have known. Sometimes he poops himself too quickly to have got him to the toilet in time, and sometimes I simply mis-guess the source of his agitation. In the end you have to realize there are bigger problems in life and not get consumed by the whole bathroom issue.

Not only does Grandpa sometimes have difficulty understanding what his body is telling him, but the problem is made worse by the fact that I am giving him (doctor prescribed) laxatives to even make him go. By this past summer he was retaining so badly that he kept becoming completely impacted which resulted in several very messy enema incidents on the bathroom floor. Bad as changing a stinky diaper is, and as much as it isn’t fun to clean poop from someone’s bottom, it is a veritable walk in the park compared to an “Alzheimer’s and enemas” incident which ends up with poop and enema liquid all over the bathroom floor. Yes, that makes changing a diaper filled with diarrhea seem a very good idea indeed.

Of course, the idea is not to give Grandpa diarrhea. The ideal is to simply make his stool loose enough, and regular enough, that there are no disasters. But how much laxative Grandpa needs depends on how much he has eaten and drunk, and that is a moving target from day to day which means that if I want the perfect poop I will have to continually adjust the laxative dosage. The doctor was quite frank when she prescribed the laxative, and said I would have to adjust the dosage as needed and it would be “messy.” So in the whole laxative dosage game, failing to give enough means impaction, and giving too much means dealing with a watery soup of diarrhea. Rather than attempting to adjust the laxative dosage on the fly and ending up in some situation where I am too clever by half, I have settled on giving him a dosage every other day. This is not perfect, but seems to end up with the best average. Some poops are a little on the hard side, some are soup, and some are just right (sounds a bit like a Goldilocks story–ha ha). But at least we haven’t had any more impaction, and a regular schedule and dosage means I won’t forget when I am supposed to give him laxative, and how much, two things which are a big problem if you are constantly adjusting things on the fly.

Whatever the exact consistency of the bowel movement, the laxative means that usually when Grandpa has to go, he has to go now–Which is a good thing because it means he won’t be able to hold it in and become impacted. But it can be a bad thing, too. Two or so weeks ago Grandpa had to go to the bathroom. I was working on supper, and it was a rare very good day for Grandpa–which meant he was tottering about all by himself. He wasn’t agitating or anything, so I simply kept an eye on him as I went about my own business. I saw him totter off down the hall and enter the bathroom. I thought that slightly odd, since it’s been a long time since he’s entered the bathroom by himself. Since he had made no agitation I figured he was simply wandering about, and so continued on with what I was doing. But not to leave him unobserved for too long, I went back to check on him a little later. The sight that met my eyes was Grandpa standing in the middle of the bathroom floor halfway through pulling down his pants and simultaneously in the middle of going poop (I will spare you the graphic precision).

Zing! The bag of kale in my hand went flying as I lunged to intercede before the situation became any more disastrous. My quick work meant that event did not turn out too badly. But it is an example of how thin the line between disaster and success can be. Sometimes the only difference is a few minutes. And while sometimes you manage that last minute save, sometimes you aren’t there to do it.

Two days before Thanksgiving, the latter happened.

I was preoccupied working on my computer, and did not register anything unusual coming from Grandpa in the living room. My first hint that something was wrong was the exclamation from Grandma. It was the “big disaster” sort of gasp so I was out of my chair and down the hall immediately.

Then I saw it. Apparently Grandpa had walked to the middle of the living room, dropped his pants (much like he had done a few weeks ago, in the slightly more appropriately location of the bathroom) and went poop in the middle of the living room floor. By the state of the evidence, he had then walked back and forth through the poop, smearing it across a ten foot stretch of the living room carpet before setting his bare soiled bottom on the couch. On first sighting the disaster area, there was the strong desire to run around in a circle screaming. Not just because it was gross, but because I am thinking, “How on earth am I going to get that cleaned out of the carpet?”

I had dearly wished to avoid such an incident, but given that I have stopped him from dropping his pants in various other inappropriate places in the house I did realize this possibility was a continuing danger. I suppose part of me suspected it was somehow inevitable, eventually, given the fact of Murphy’s Law. Nonetheless, poop smeared over a ten foot stretch of the living room carpet is one of the worst house-keeping nightmares in my book.

And if it is two days before Thanksgiving and you’re having the entire extended family over on Thanksgiving . . . well, that doesn’t help, either. Grandma later admitted that she felt like she wanted to faint at the sight. Thankfully, she did the best thing she could under the circumstances–she hid away in her bedroom, leaving me to deal with the situation as I found best.

The first thing to do was limit the extent of the damage. Grandpa was seated on the couch, poop smeared over the bottom of both of his bare feet, excrement squished up between his toes. Every movement of his feet meant more poop on the carpet. I quickly decide my first step was to get him where any further mess he made wouldn’t be difficult to clean up. So I scooped him up in my arms and deposited him on the toilet. Next step was to get a very large putty scraper and scrap off as much poop from the carpet that I could. The third step was to call my Mom and sister and request that someone send me some written electronic directions for cleaning poop out of the carpet, pronto. Then I wet down a bunch of paper towels and laid them over the long trail of poop stain so as to hopefully keep everything from drying into a hard crust before I could finish cleaning.

Then it was back to the bathroom to clean up Grandpa, who by this time was loudly hollering for someone to come and rescue him. You don’t really think about how many folds and crevices there are around, beneath, and between your toes until you’ve had to clean poop out from every one of them. Finally, with Grandpa changed and cleaned, I deposited him in the bedroom, where he wouldn’t be in the way, and turned my attention back to cleanup.

For those interested, the directions I was sent, and which I followed for the cleanup, were these:

1. Mix one tablespoon of liquid hand dishwashing detergent and one tablespoon of white vinegar with two cups of warm water.
2. Using a clean white cloth, sponge the stain with the detergent/vinegar solution.
3. Blot until the liquid is absorbed.
4. Repeat Steps 2 and 3 until the stain disappears or is no longer absorbed into the cloth.
5. If the stain remains, use an eye dropper to apply hydrogen peroxide, and then apply a drop or two of ammonia.
6. Sponge with cold water and blot dry.

Except, I didn’t follow the directions exactly. The whole blotting procedure was a good start, but I judged that “blotting” was not going to lift the offending stain out from where it had sunk down into the carpet fibers, so as the cleaning progressed I moved into a scrubbing motion with the cloth when applying the cleaning solution. Then I moved on to using a stiff scrubbing brush which I applied with such furious scrubbing that I began taking out carpet fiber. Also, the size of my disaster was such that the idea of using an eye dropper to apply hydrogen peroxide or ammonia was laughable. I took a bottle of hydrogen peroxide and made repeated pouring passes over the offending spots. Same with the ammonia.

I spent about two hours cleaning on the day of the disaster. I did not apply any hydrogen peroxide or ammonia the first day, and I ended the cleaning session by liberally sprinkling baking soda all over the carpet and briefly working it in. This was suggested to help eliminate odors, and it did seem to help a lot. The next morning after the carpet had dried somewhat, and with fresh daylight, I saw the stain was still quite visible. So I vacuumed up the baking soda and moved on to hydrogen peroxide.

It is very important to soak as much liquid as possible out of the carpet with fresh paper towels after every cleaning pass. This is how you actually lift away the offending material/stain. It does little good to work in the cleaning solution and just leave it to evaporate. If you do that, all of the detritus will remain in the carpet after evaporation. Basically, you want to keep cleaning until the paper towels used for mop up don’t come away discolored.

After another approximately two hours of cleaning the day before Thanksgiving it looked pretty good, and I decided it would have to be good enough. On Thanksgiving day when the carpet had again dried I could still see a faint stain, but I had scrubbed so hard and used so much cleaning solution, that the surrounding non-stained carpet was also beginning to look faintly paler in color. Any further cleaning was likely to end up with a noticeable pale strip running through the carpet, even if I managed to remove the last faint traces of stain. Since the stain was faint enough that people not looking for it might not even notice–and since after prodigious amounts of detergent, hydrogen peroxide, and ammonia, it was pretty benign in any case, I decide to let it rest.

Thanksgiving was saved. Grandma wanted to keep the whole disaster hush-hush but I wanted to greet every arriving relative with the salutation, “Who wants to lick the carpet?”

That’s just the way I am.

Another trip down memory lane today . . .

While I grew up Grandma and Grandpa lived in the country. They lived on the Pennsylvania-New York border, and to reach their house you had to drive along a road titled—fittingly enough—“State Line Road.” Grandma and Grandpa’s old house was at the end of a dead end road, their land butted up against a large tract of village owned woods.

As a young child, I felt a certain air of mystery surrounded their property. Behind the house ran a tiny creek and on the other side was a stand of trees that seemed to me the beginning of a dark and forbidden forest, neatly stacked heaps of dead wood and bramble cleaned up by Grandpa marking the edge of some ominous unknown. In the other direction, across the road, were the two small barns. If you went past them the world opened up to a distant unknown horizon, a curiosity of forests and fields. Where the dead end road stopped beyond the house it became a forest trail that quickly disappeared under overhanging tree branches. To my child’s mind that trail led off to the place where people became lost, never to return. Slightly safer was the pond out behind the house. That was far enough away to hold a sense of adventure, and yet not too far so that after one had looked at the water and frogs one could make a quick return to more familiar surroundings.

Timid and fretful, I saw hidden—or not so hidden—danger on every side, and failed to take advantage of all the interesting places I could have adventured if my sense of exploration had outweighed my sense of paranoia. But if my fears of the unknown kept me from experiencing many of the country pleasures, there was still one I could enjoy: tractor rides.

Grandpa had at least two old tractors which he was constantly fighting to keep repaired and running. The smallest was probably a prehistoric incarnation of a lawn tractor, before anyone thought of inventing a mowing deck. What useful purpose it had served, or could still serve, I didn’t know. To my mind it existed to give tractor rides.

Grandpa wasn’t socially skilled, and entertaining grandchildren was no exception. His repertoire was limited to reading stories, and giving tractor rides. Tractor rides were a rare treat—partly because, I think it usually didn’t strike his fancy, and partly because a functioning tractor was often an uncertain and frustrating proposition. I remember hanging around the barn and inquiring if perhaps the tractor would be fixed soon, and would we be going on a tractor ride today. The answer was “Maybe” in the sort of why that spoke of patience strained by questioning little children, and uncooperative machinery.

But those tractor rides did come, and all the better when they came unexpectedly. Grandpa had constructed his own sled to drag behind the tractor. The sound of the tractor engine—or the announcement that Grandpa was giving rides—would send me running outside. Tractor and sled would pull up, and at the command of, “Hop on,” we would all clamber on. Then it was off across the yard, around and back, and around again. It was excitement—a taste of the country life, and grand adventure. Then, all too soon, it was over and the tractor returned to the barn until next time.

We have a picture of Grandpa giving a tractor ride. A gaggle of cousins are crowded on the sled, grinning like fools. Grandpa rides up on the small tractor, staring intently ahead hands held at the ready, perhaps carefully nursing the fitful machine along.

Grandpa made things. I am sure growing up during the Great Depression taught him to be frugal, but making things was part of who he was. I think I share some of that with him. I look at things and think, “I wonder what I could make from that.” I face a problem and ponder how I might come up with an ingenious solution fashioned out of what I have on hand—something that is cheap and effective. It is a challenge, a skill, and an art. For me, it is also almost like a game.

Many things Grandpa made in his life sprang from necessity. Early in his married life, he built a cinder block house for his young family. It was a tiny house, and it wasn’t beautiful, but he made it with what nickels and dimes he had. Over fifty years later, the he still had the wheelbarrow he used to mix the mortar for that cinder block house. I know, because I used it. The wheel is a simple metal rim, one of the handles has been replaced, and it has more rust than those many years ago. Grandpa never got a new one, because what he had still worked.

If Grandpa made, and fixed, many things out of necessity, or frugality, it was what he made for amusement that earned him more recognition. A story told to me—with no small amount of marvel—was how once in his youth, my uncle Kevin wanted a motorcycle. As a result, Grandpa scrounged up an old engine to a mini-bike and using that engine as a foundation he built a functional wooden motorcycle. It was the epitome of ingenuity.

Whenever an idle moment came upon Grandpa, he was always making something. It was as if his hands could not remain still. I remember visiting, and seeing Grandpa sitting at the kitchen table, snipping apart soda cans to make miniature airplanes. He made a collection of them, and they hung suspended from the ceiling as if caught in flight. Visiting our house for a birthday party Grandpa found some oddity outside and began whittling a whistle. It worked, too, if you knew how to use it.

Grandpa loved music, and had an ear for it. Without the money to afford lessons, anything he wanted to learn he taught himself. He taught himself how to play the piano, the guitar, and the mandolin. He could fix pianos too. He could tune a piano by ear, and even attempted a piano tuning business. I have some of his business cards. There was an entire box of them sitting in storage, apparently untouched. “Accurate” and “Reasonable” the cards say. Accurate and reasonable he was, but a business man he was not. Unwilling to promote himself—as the languishing box of untouched cards testifies—the business went nowhere.

Of all the many things Grandpa could do, and of all the many skills he had, and the things he made, what stands out the most to me in speaking about who he was and what he could do were the Indian and the canoe. Grandpa always had a fascination with frontier American life, in particular with Native Americans. He would read about them, about how they did things, and how they made things. He made a pair of moccasins out of a deer hide. He fletched arrows. Then he made the Indian.

To call it amazing was an understatement. As a first time attempt it was unbelievable. How, exactly, he constructed the life sized realistic figure, I don’t know. He used some type of plaster for the skin, but the effect was almost startlingly life-like. One day I walked into the garage, arriving for a visit, and there the Indian was, standing tall and proud, his face creased with stern lines, his steady eyes staring into the distance. You could stand there and look at him, noticing every care given to the details.

As a first attempt the Indian was certainly not flawless, but with raven black hair, loin cloth, bow, and pouch, he was undeniably a unique and meaningful work of art. To simply walk into the room was to know it was art, made by a real artist. If Grandpa had refined his skill he could have made statues worth significant money and made a name for himself as an artist in his old age. Instead, he made the one Indian, and never made another one again.

Then he made the canoe. If the Indian astounded my child’s mind as a work of art and something beyond the ability of any mere mortal, and certainly a Grandpa (so a child’s mind thinks), the canoe impressed me on a more technical level. You can actually make a canoe, all by yourself? You don’t need some special machinery to make it? And it won’t sink?

It didn’t sink. It seemed nothing was impossible for Grandpa. He painted the canoe bright red and took it out for excursions on the pond. He even let me paddle the canoe.

I don’t know how Grandpa made the canoe. I’m sure he read something about it somewhere. Whether it was just an idea that he built upon and pieced together himself, or careful directions that he discovered somewhere, it was a knowledge collected together in his own mind and destined to die with his mind.

After the canoe, Grandpa never did another major creative project. His days as an artist were waning, and for me the Indian and the canoe would always stand as symbols of what he was, and what he could have been.

Last Saturday while I was drying Grandpa off from his shower I discovered two pressure sores on his bottom. They were in mirrored positions on the bottom of his buttocks–clearly the result from sitting in one place too long. It was a depressing discovery.

The sores themselves were not that bad. They were each maybe a quarter to a half inch in size, and in appearance like blisters. The skin was not broken. But what they were was another sign that things are becoming worse. It was the next milestone, the first foreshadowing of the things I will have to face.

They weren’t bad pressure sores. I put a band-aide over each, and they went down and went away over the next day. But I dread the pressure sores that won’t go away, and that will only get worse. The sores on found last Saturday were only the mildest of pressure sores, but it was a mark of how bad things are becoming, and how close we are getting to the end.

It would have been unremarkable if the pressure sores had been on his ankles, or his hips, where bones are near the surface. Already he has had very minor sores where his diaper chafed over his hips, and when that happened I would put padding between him and the diaper and they would go away. Those problems had a fairly easy solution. The big difference this time was that not only were these sores far larger than I had ever seen before, but they were on the bottom of his butt–that is the anatomical part on all of us which has the most padding. But Grandpa is eating so poorly, and shriveling up so much, that even his butt doesn’t have enough padding anymore. That was the really depressing part.

There are some easy alleviating measures that can be taken if a pressure sore appears on a hip or ankle (lay on the other side, apply more padding to the area) but if you get pressure sores on both (buttocks while sitting on a very comfortable couch), there isn’t much you can do the make the situation better. What are you going to do, sit on your head? Or perhaps suggest that he get up and walk around some more–oh, that’s right, he isn’t walking around because he can’t. The best possible solution would be to have Grandpa lay down some of the time instead of sitting up, but the very reason he spends so much time sitting up is because it is not comfortable for him to lay down (he is having issues with breathing problems). In facing the pressure sores on the bottom I had to face the question, “What do I do?” and I couldn’t come up with any answer. I couldn’t think of anything I could do.

The band-aides weren’t really a solution. They were more a “if this blister bursts I don’t want it to get infected so I’ll cover it” measure. But the sores got better simply because Grandpa was more active in the following days and so gave them a chance to heal. I didn’t really do anything. We were just lucky. But as Grandpa grows increasingly less mobile that path to easy healing will be increasingly less available.

Then what? Ah, that is when your mind starts playing with the “What ifs.” Do you know how nasty pressures sores can get? Check out the description of Stage IV. And here are some pictures. (Warning: the pictures are not pleasant, but I actually did not link to the really hideous pictures of pressure sores you can find. Those are enough to make a grown man scream.)

It was particularly frustrating when I went online to see what advice and help I could scrounge up for dealing with pressure sores. How to deal with pressure sores? Eat better. Drink better. Have better posture. It was very clearly confirmed to me (not that I didn’t already know it) that Grandpa has all of the problems that make him a perfect candidate for pressure sores. And the wonderful solution suggested by the health websites is to make all those problems go away. That way he won’t have pressure sores. Which means all of the wonderful advice was completely useless, because if Grandpa could eat better, drink better, and have better posture he wouldn’t have gotten pressure sores in the first place. It seemed nobody had any advice about what to do, if your patient isn’t eating well, isn’t drinking well, doesn’t have good posture, and is getting sores on the bottom of his behind. They say you should adjust the patient every two hours . . . but if the patient is not willing to lay down, and only sits on his butt, I guess that means I should just pick Grandpa up and shake him for a few minutes every two hours to get the blood flowing.

Enough of that. Sarcasm doesn’t help. Truly, physically making him adjust his weight occasionally is really all I can do. It feels like scant little help. But my sense is that nobody has any better ideas. And I don’t either.

I got a very kind comment today, which reminded me of my shortcomings. Reader Pam said:

Rundy,

Are you managing to hang in there, dude? I keep you in my prayerful thoughts. It’s been so long since you’ve posted anything that many of of worry about your well-being, as well as Grandpa’s. Those of us who share your path, providing care for a beloved elder, are concerned.

Thanks for asking, Pam. I am very sorry I haven’t been more consistent in updating this website. Plenty has happened, and I will try to make an effort over the coming weeks to post a little more (like, at least once a week, maybe). I can say briefly that I am holding up very well, and I appreciate your prayers. The silence has been because of my preoccupation with other things. Grandpa is not holding up so well, but we have not had any crises with him either so I guess that is as good as can be hoped. More details on that later.

Tomorrow is my grocery day. My sister comes over to watch the house while I am gone, and I head out to purchase the week’s groceries. It’s kind of funny, but I think almost nobody knows who I am shopping for. People seem to assume I am buying the nutrient drink for myself.

“You really into the fitness drinks? You drink them instead of a meal?”

I try to keep the “Are you nuts?” look off my face. “No, they’re for my Grandfather. He has Alzheimer’s and won’t eat very much anymore.”

“Oh.” That always kills the conversation. It’s awkward then, and usually they try to say something about what I’m doing is so wonderful, but you can tell they wish they hadn’t opened their mouth.

I don’t know what they think about the bags of adult diapers I buy. It is probably better if I don’t try to imagine what they might be thinking. (No, I don’t have a “problem” okay? My plumbing works fine . . .) And then there is the laxative. The latex gloves. The enema packages (though no more of them since the laxative started working). It’s not embarrassing because it isn’t really my problem, and I don’t care if they think it is. But as those items, and the baby wipes, baby oil, baby wash, and baby food all go down the check out line, and I can’t help imagining what they think I am, and responding in my mind, “Lady, you have no idea.”

“Mr. Johnson has a severe case of Alzheimers. Not only do we not know where he may be going, or which way, but he doesn’t know either.”

How many times are words like that spoken all over the country? Wandering is a common and constant danger with Alzheimers patients. Sometimes the search has a happy ending, sometimes it is sad. And sometimes, it is hard to know whether the ending is happy or sad.

Lawdog has a post on his blog about searching for Mr. Johnson, who had a severe case of Alzheimers. It is a very touching story, and I suggest you read it. The story gives another meaning to the phrase, “You can’t go back again.” Sometimes you can, even if you can’t. And sometimes you can’t, even if you can.

Hat tip to the Ethereal Voice for bringing the excellent peice of writing to my attention.

Caregiving is not for the faint of heart, or weak of stomach. It is a bit like motherhood in that regard. One gets to become intimately familiar with all the bodily functions and fluids of the one entrusted into your care. Faced with some of the grossest situations in life, there is the option of either getting really sick, or laughing at the way life is. This post is a nod to the latter option, but if you have a weakness to the former, maybe you’d better not read on.

What is the most gross? It’s always a matter of personal sensitivities. Let’s review some options and make a decision.

Spit. Every parent has gone through the “fishing junk out of a baby’s mouth” experience. Usually it is prefaced by the exclamation, “Ahhh! That’s yucky! Don’t stick that in your mouth!” At which point the finger must be inserted to pry the offending object from the unwilling baby’s mouth. It can be kind of gross with the baby slobbering all over the place, especially if the naughty object was a piece of paper, or something else that can be wadded up and absorb a lot of spit in a squishy, nasty, sort of way.

I have undergone a lot of spit experiences. While I haven’t been required to take inappropriate objects from Grandpa’s mouth, I have been required to extract his teeth numerous times. Grandpa has dentures, and as his Alzheimer’s has worsened he grows increasingly unable to remove and replace his dentures. Early on he would try to take care of his own teeth, but as that become a process fraught with disasters I instigated a new routine where he was tucked into bed and I would then ask him to take out his teeth and put them into a container I provided. Afterward, I would clean his teeth. That worked for a while, but we have the occasions when he is either so exhausted he doesn’t have the energy to take out his teeth, or he is completely confused over the process. I will say, “Take out your teeth, Grandpa.” He will grip the end of his bed, or the blanket, and pull for all he is worth, saying, “I’m trying! I’m trying!” In these circumstances I must remove his teeth myself. This means firmly grasping his front top incisors and gently wiggling the teeth back and forth until the suction fit comes loose and the top plate pops out. Then I snag the bottom teeth. If Grandpa had a bedtime snack before going to bed there is often food goobering up the teeth, and they can come out with long stringy spit. Kinda nasty.

I have also needed to offer a helping hand with eating. Grandpa spits out a lot of food. Back in the days when his mind was still whole there would be the occasional bit of food he couldn’t properly chew with his dentures, and he would have to spit it out. Nowadays a lot of food is considered inedible by Grandpa, whether it really is or not. When his mind was better he would carefully spit the offending food back into his spoon and set it on the side of his plate, on the table, or–most often–into the small garbage can beside his seat. As he grew worse he began to have trouble with the garbage can, taking stuff out as often as putting his food rejects in, and half the time simply tossing his food on the floor instead of making it into the garbage can. So, the garbage can was removed to avoid Grandpa fishing through the trash with his spoon. What food he threw on the floor was swept up after supper. But the next progression of his decline was to throw his rejected food back into his bowl, or chuck his spat out food back into the serving dish. The problem with the former is that he would end up continually sticking the rejected food back into his mouth, and spitting it out again, getting no food into his stomach. The problem with the latter is obvious. To forestall all of these troubles, I began taking an active role in his disposal of rejected food. When I saw he had something to spit out I would hold out my hand to his mouth and say, “Spit.” He would spit the food out, I would dispose of it, and the meal would go on. Of course this meant handling his chewed up wads of food, but all in all it was the best solution.

Snot. Grandpa has a problem with a drippy nose and for years a roll of toilet paper or a box of tissues was always close at hand. As Grandpa began to decline, he began to increasingly mis-use the tissues. He would endlessly tear them up, stick them in his mouth, or use them to clean up his food instead of eating it. As a result, tissues and toilet paper had to be removed from his access. This means that when he isn’t wiping his nose on his sleeve, I must wipe his nose. As anyone who had done this knows, the snot bleeds through the tissues a bit, especially if it is really wet. A bit gross, but not real bad in my book.

Pee. Back in the day, it seemed like half of my time caring for Grandpa involved pee in some way or another–getting him to the bathroom so he could pee, or cleaning up the mess when he had a pee accident. Faithful readers of this blog will recall past stories and involved disasters. A big problem with pee is that there can be so much of it, and–being liquid–it easily goes all over the place. It is not fun to clean out of the carpet. Probably the worse way to experience pee is to set your bare foot in a cold puddle of pee in the dark in the middle of the night. That will really wake you up. And then you learn that pee makes things sticky so that if you simply wipe off the linoleum or your foot there still remains a certain sticky sensations that reminds you more cleaning must really be done.

Since Grandpa is no longer able to use the bathroom for his bladder functions my problems with pee have been almost completely isolated to the regular diaper change. After having mopped up vast puddles of pee, changing a wet diaper is pretty tame. And as nasty as stepping in a puddle of cold urine is, it still doesn’t make the top of my gross list.

Poop. It comes in different shapes, sizes, textures, and oh so many different smells. A veritable banquet of sensory experiences. Poop definitely ranks up there on the gross chart and is commonly the place where sensitive stomachs fail. It doesn’t bother me that badly. While certainly unpleasant, cleaning up a soiled bottom is more contained than a urinary disaster. Also, not breathing through your nose so you don’t smell the stench, and thinking about how it is all really just chemical compounds, helps. Plus, simply having years of experience helps. Familiarity kind of dulls the senses.

The real big problem I notice (and anyone who expects to face this in the future, take note) is that it is really hard (if not impossible) to completely rid your hands of the odor of poop if you should be so unfortunate as to get it on your hands. It can be the smallest amount, and double washing your hands can still leave a faint smell. Those infinitesimal cracks in your skin, those microscopic bits . . . it’ll have you boiling your hands if you’re not careful. The most fail safe solution is to wear disposable latex gloves when wiping a soiled bottom. But here is a tip: Do yourself a favor and buy gloves that have been pre-starched. When I was first getting started I bought a small packet of gloves pre-starched and they went on easy. Then I thought I would get smart, and I bought a bulk container of gloves. Only, these weren’t dusted with cornstarch, and they were impossible to get on, properly. Dusting your own gloves with starch is way too much work. Buy the pre-starched latex gloves. You’ll thank yourself.

When all is said and done, poop is not the most gross thing for me. That honor goes to . . .

Phlegm Goobers. What can I say–it’s a texture thing. My Grandpa smoked all his life so now he is hocking up big fat snotty goobers as a result. When he was more sound in mind he would dispose of them himself, properly. Now he requires assistance (I must have my ear ever tuned to the sound of his hocking up a goober) and if I somehow fail to realize he needs assistance the goober has a good chance of being spat on the floor wherever he happens to be. Cleaning up a juicy, quivery, slimey goober from the carpet is gross enough. But stepping in one with your bare foot, having it slick across the bottom of your foot, so moist, so sticky, and oh so slimy–it is enough to just about make this grown man scream.

That is what I think is the most gross. Your opinions may vary.

In an earlier entry I showcased a video which told a fictional story about a young Lisa and her mother with Alzheimer’s. In that entry I commented on Lisa’s youth. But if you watched that video, you surely noticed the mother’s age as well. She appeared in her forties or fifties. A little inaccuracy in the story, you think, right? Nobody in their fifties could get Alzheimer’s, could they? That is just a disease of old people–those in their sixties, seventies, and eighties.

Right?

Unfortunately, no. While the vast majority of Alzheimer’s victims are in their sixties, seventies, and eighties, not all of them are. And for those who suffer from early onset Alzheimer’s it can be particularly devastating for them, and their families. Someone who should have many more years of productive life are incapacitated and left depending on their spouse, or young adult children. It is hard on loved ones, not only to lose someone so early to Alzheimer’s, but because such Alzheimer’s victims can still be physically healthy–a trait which can making caring for them especially difficult. An eighty-year-old man has a lot less energy to cause trouble than a fifty-five year old man. As a result it, can be a particularly difficult nightmare to take care of someone who is relatively young and losing their mind to Alzheimer’s.

The New York Times has a very old article about just such a circumstance. It is called Another Name for Madness and was written in 1983, when everyone knew much less about Alzheimer’s. The author writes about her mother who, at 54, is suffering from Alzheimer’s.

The article begins:

In the autumn of 1979, my mother killed the cats. We had seven; one morning, she grabbed four, took them to the vet and had them put to sleep. She said she didn’t want to feed them anymore. It occurred to me that she might be going mad.

A few months later, she disappeared. When she returned, after four days, she had no idea where she had been. By now, she, too, knew that something was wrong. Over the next two years, she was subjected to periodic memory tests and physical examinations by a battery of general practitioners, gynecologists, neurologists and other physicians. Day by day, she became more disoriented. She would seem surprised at her surroundings, as if she had just appeared there. She stopped cooking, and had difficulty remembering the simplest things.

Finally, in September 1981, the neurologist who by then was in charge of the case, told my sister, Margaret, what he had suspected for some time: My mother had Alzheimer’s disease.

I strongly suggest you read the article, particularly if you are a caregiver for an Alzheimer’s patient, and especially if you are caring for someone who has early onset Alzheimer’s. The article may not teach you anything new, but it will let you know someone has gone through what you are facing. And sometimes knowing that we are not alone is what we need most.

I wanted to quickly say thank you to those who came by from Jane Gross’ NYT blog and commented. I did read all of your comments, even though I didn’t respond to them all. It was interesting to see people commenting from Ireland, Germany, and all across America.

One common thread I noticed in a number of comments was a concern about my own well-being. To those who are concerned, let me assure you that I am in good health, and I am looking after my health. I could write an entire post about how I tend to my own health–and maybe I will later–but I haven’t the time for that right now. So I thought I would briefly assure those of you who were concerned, and tell you all, “Thanks for coming by!”

The short film above, “My Name is Lisa” by Shelton Films, is a fictional account that portrays caring for someone with Alzheimer’s Disease. It won 3rd prize in Youtube’s 1st international short film competition. Perhaps some of you had already seen it. If you didn’t just watch it, I strongly encourage you to watch it now before you read my comments.

Okay, you watched it? I have a few comments.

I think it is a great short film on Alzheimer’s Disease. It does an excellent job of conveying certain feelings, some more obvious than others.

First, there is the emotional impact of discovering that the mother is sick: sick with Alzheimer’s and slipping away from the young girl. The impact of that was probably lessened for you, since I gave away what the film was about. To truly appreciate how that was pulled off, you have to watch the film the first time not knowing what it is about (as I did). There is a sense of confusion that changes to growing horror as realization sets in. Anyone who has dealt with a parent who succumbed to Alzheimer’s has dealt with that very confusion and horror in their own lives as the true reality of what they were dealing with became apparent. The film captures the essence of that discovery powerfully.

Second, the film captures the emotional arch of care-giving. Lisa starts out amused and bemused by her mother’s antics, but that quickly changes. Frustration and fears begin to mount, along with emotional exhaustion. Any caregiver recognizes this progression. I think the incident where Lisa blows up at her mother during the pizza delivery is particularly painful to watch because it stands in for the places and times where we have each failed in this way–either thinking, or even saying the equivalent of, “Why can’t you do it? You can’t do anything!” Each of us has felt some of the secret shame after such actions–as sure as the mother’s sad uncertain smile comes–because we know how wretched they are in their inability, and our anger and unkindness becomes like an awful accusation of our own failures. And anger cannot stave off the loss, personified when Lisa’s mother asks her, “Who are you?” For someone caring for their parent there is perhaps nothing more crushing than the sense of loss when Alzheimer’s finally robs them of the parent-child relationship. But that is not the end. The final step in the emotional arch comes as the film draws to a close and we see Lisa and her mother eating sandwiches. Acceptance and peace has been reached, the end every caregiver should hope and strive to reach. As Lisa says, “It’s okay, Mom.”

Finally, I think a lot of people get hung up on the “unreality” of a young girl caring for her very incapacitated mother. I think such fixation misses the powerful symbolic value of the film’s portrayal. Many adult children caring for their parents have, at one time or another, felt like little children again in the face of their parent’s dissolution. The enormity of the thing faced makes us feel small again. I am certain many adult daughters have felt like little Lisas, alone, afraid, and overwhelmed in caring for their parent. Choosing a young girl to portray the caregiver conveys this sense very well. A caregiver can look and say, “Yes, that was me. That was what it felt like.”

In care-giving, sometimes we are all like Lisa.