Author: Rundy

On the 4th of July, the extended family held a gathering at an RV campground in Pennsylvania. A pavilion was rented, food contributions lined up, and then the day arrived.

As it happened, I had been to the RV campground many years ago. Many years ago Grandma and Grandpa had a camper at the campground, and for two or so summers they took grandchildren to visit. I remember the dirt paths, the swimming pool, the creek, and the waterfalls. Now, over a decade later, I find myself returning. The journey there seems so familiar, and yet vague, as I make the last few turns. Then the campground is in sight, and the memories come back.

Everything looks the same at the campground, and yet it is not. A few years ago a massive flood swept through the area, scouring out the creek, eating out embankments, washing up boulders, and knocking over trees. Much escaped the water’s ravages, but some things did not. And more than the land has suffered the ravages of time.

It has been nearly two years since I began caring for my grandfather, and watching him succumb to the ravages of Alzheimer’s. A decade more at least since I last visited the campground. Those many years ago Grandpa could walk. He could run, he could ride a bike. I have a memory of a summer day, Grandpa seated straddling a bike, sitting under the shade of a vacant pavilion. Now I pull the car up to a pavilion teeming with relatives, and get the wheelchair out of the trunk. I help Grandpa into the chair, and take him to the party. We have arrived late, because Grandpa can’t stay long.

Alzheimer’s drives its victims to their knees–figuratively and literally–as inch by inch, day by day, the battle is lost. Before, Grandpa staggered and stumbled as he tried to walk. Now he crawls aimlessly about on the floor unless I push him in the wheelchair or carry him, feeling so light and empty, in my arms.

Before he struggled to get to the bathroom in time and use the toilet properly. Now I change his diaper and give him a laxative to make sure he does go.

Before he couldn’t remember the last time he had taken a shower, and struggled to shave himself. Now I bathe him, and shave him, and dress him.

Before I cut up his food so he could feed himself. Now that fails, too. His hands shake and jerk clumsily as he tries to bring the spoon to his mouth. He grabs imaginary implements and food and wonders why nothing reaches his mouth. His mind wanders as he plays with the folds in his clothes, the food in front of him forgotten. It is a battle to eat, and one he is slowly losing, but which he desperately wishes to fight alone.

He is parked in front of the picnic table and I take a plate to the food buffet, looking for things he can eat. He does well enough for the meal, but his energy begins to fail with dessert. He consents to allow someone else to feed him the chocolate cream pie–some things he wants more than his dignity, or independence.

After the meal, I go to the falls again. Last time Grandpa ran on ahead, racing. This time, I go without him, following the path among the trees. The falls are still there, much the same. Perhaps they seem smaller than before, less threatening and less majestic. Time will sometimes do that. Still, the water cascades down, loud and uncaring, as if it thinks to drown out the world’s sorrows.

The days pass for Grandpa as a lonely vigil on the couch. Sometimes he sleeps a little while, but more often he looks at magazines, looking at the pictures and wondering what they mean, reading the words and wondering what they say, or else just sitting on the couch lost in his own thoughts. His world has shrunk so that if you are not right beside him, you are not there at all. He calls out, only to sometimes startle when you answer, or appear beside him.

Nights are the lost time. In darkness, nothing has meaning. He wakes in the darkness and speaks, “Mom. Mom? Are you there Mom? Mom. Answer me. Mom? I can’t see. Mom?” I hear his words, lying in the dark, but no answer I give is answer enough. He crawls about the room in the darkness like a blind man, but more than blind because nothing has meaning. He is lost in the bedroom, lost in the night, lost in his own mind, beyond the reach of any help to bring him back, until exhaustion takes him.

The end is coming. Slowly, perhaps, but inexorably, as every little loss brings one step closer the final defeat. But perhaps the battle should not be considered as lost. Maybe it is better to say that the battle is won, day by day, as with love he is helped to the end, with what dignity and grace can be mustered. If it is how we live that matters, then each day can be taken up in daily victory, or given up in daily defeat.

I leave the falls, the roar of the water quickly fading away behind me. Back at the gathering, soon Grandpa wants to leave. Two hours is all he can take. So we leave. I drive the rutted dirt path, taking it to the highway, and then home.

Ten years have passed. It feels like nothing has changed, and yet everything has. And there is no going back.

It has been awhile since I wrote, I know. I have been keeping busy.

I have had my good days and my bad days, and plenty of just average days. But those bad days are always hiding around the corner, ready to spring on me soon as I let my guard down–when I’m least prepared–and smack me up-side the head. I must always be ready for those bad days.

And bad nights. Bad nights often come before bad days. If the bad day comes first, there is a good chance the night will be okay–Grandpa will be so tired from the day that he will sleep through the night. But if Grandpa has a bad night, the following day will certainly be bad as well. Tiredness has a huge impact on Grandpa’s ability to function, all the more so as he declines. It’s a terrible thing to be in the middle of a horrible night and knowing that the next day is going to be even worse.

And those bad nights can spring out of nowhere.

Last night started out okay. In fact, it started out pretty good. I got Grandpa into bed with no unusual trouble, sang him a few hymns and was in bed myself and turning out the lights at 10:30 PM. That isn’t going to bed early, but it isn’t going to be terribly late for my present life, either. I was looking forward to a decent nights rest.

At midnight Grandpa woke up.

And I’m not sure he went back to sleep for the rest of the night.

These kind of disasters unfold slowly (as there are many hours in the night) and at first one isn’t entirely sure how bad it will end up. A lot of time is spent hoping it will all be over in the next five minutes. Sometimes there is an obvious reason from Grandpa’s insomnia–a head cold or chest congestion. But other times there is no explanation outside of Grandpa’s own broken mind.

I don’t know why he didn’t go back to sleep. Maybe I should have changed his diaper. Maybe a wet diaper was keeping him awake. But he has slept with a wet diaper many nights before without the least trouble. Sitting here, looking back, that is the only reason I can possibly come up with. But I don’t think there was any reason as such. I think he woke up because he had to go to the bathroom and when he woke up his mind wandered off down a dark path and couldn’t find its way back. It was one of those fateful occasions when Grandpa forgot he was supposed to be sleeping.

At least that is my explanation.

In any case, Grandpa didn’t quietly go back to sleep. He began to agitate, and talk. I lay down on my bed, and tried to go back to sleep. He agitated, and I hovered on the edge of sleep, thinking, “Please, let him lay his head down and go back to sleep.”

But it was not to be. If he lay down for a moment he would soon be sitting back up again, fiddling with his bed and talking.

Seeing that we might not get a quick end to the matter, I donned my ear plugs, put a pillow over my head, and tried to ignore Grandpa and go to sleep. I may have dozed. I was aware that he still was not settling down but I persisted in trying to jump off into the oblivion of sleep. It ended in failure as I was conscious of Grandpa getting more agitated, and sleep fled away. I removed earplugs and pillow to find Grandpa sitting on the edge of his bed with some object of clothing in his hand, a dresser drawer pulled out and on the floor.

I tried to pretend it would all go away.

At this point I recognized all the signs of a disastrous night. Grandpa was in his “lost” state where (a) It was impossible to speak intelligently to him (b) it was impossible to get him to do anything, and (c) there was nothing tangible he actually needed. The end result is that he would fumble around doing things about the room, asking questions of thin air, and talking to himself in an attempt to find himself–a futile effort that would only end when exhaustion overcame him and he would fall asleep. There was nothing I could do except ride it out, and try to guess when he was finally tired enough that some physical prompting would get him to lay down and fall asleep.

I find it very difficult to deal with this type of situation. In the middle of the night I am groggy, not thinking clearly, and desperately want to sleep. If I grasp a clear need I usually can muster myself up to answer that need and then go back to sleep (or try to go back to sleep). But in such a situation as this, I don’t know what to do. The first impulse is to roll over in bed and try to will Grandpa into a different world and go back to sleep. That rarely works for me. So I usually end up laying there in a state of dozing, thinking I ought to do something (but what?) as the minutes grind by.

The idea is to get Grandpa back into bed and asleep, but how? The temptation is to sit up and snap, “Get back in to bed, lay down, and go to sleep!” as one would to an unruly child. I haven’t done that (yet) because it won’t work. It might make Grandpa angry, it might make him hurt, but it wouldn’t make him any more cognizant of where he was or what he was supposed to be doing. Perhaps the ideal thing to do would be to turn all the lights back on, gently coax him back to bed, and sing him songs until he settles down and goes back to sleep. That might be the best thing to do. But, somehow, lying on my bed in an exhausted doze getting up and putting on a pleasant attitude and doing all those things and thoroughly waking myself up seems like a herculean task beyond accomplishing.

The end result is that I settle for a middle ground of lying there until I guess Grandpa might be at the point of exhaustion–and I have gathered up the willpower to get myself out of bed. Then I go and physically pick him up and put him back into bed and hope that I was right, and he is tired enough to go back to sleep. Otherwise in a few minutes he will be up and back at it.

The dark hours are filled with a monologue like this:

“Hmmm. I wonder if those were the Northern lights.”

“What is this?”

“What should I do with this?”

“Where does this go?”

“What did you say?”

“Are you awake Ma?”

“Where are you?”

“Ma?”

“Gene?”

“Magene?”

“What am I doing?”

“Where am I?”

“I don’t know where I am.”

“Oh hum hum hum.”

Such monologue will go on endlessly, and if one question is answered by me it will only be quickly followed by another. If you have ever had a younger sibling who would ask questions on into the wee hours of the morning, you know the routine. If I answer with the least bit of irritation in my voice it is common for Grandpa to become indignant–that I should be irritated over his most reasonable activity. So since nothing productive ever comes of me answering his questions, I find it saves my breath, energy, and irritation to simply be silent most of the time and let his words just wash over me. Intelligible words mingle with the unintelligible, moaning and groaning intermixed. It is as if the stream of noise is there simply to keep himself from falling back to sleep. Eventually he will get out of bed and start crawling about the room, fiddling with the floor, fiddling with the dresser, fiddling with the stuff under my bed, fiddling with my bed, and fiddling with me.

On these worst nights I contemplate leaving to sleep someplace else. But, while that might seem an easy decision, it is not. I want to do the right thing, the Christ-like thing, and simply abandoning Grandpa the moment he starts to infringe on my sleep does not strike me as the most loving action. But even on a practical level, that option can be deceptive. If Grandpa doesn’t get a good nights rest, he is going to be a disaster the next day–and I will have to face that. Walking out the moment he starts causing trouble might mean I won’t have to deal with him then–but if I don’t guide him back to bed and sleep as soon as possible I may well have a worse problem in the morning than if I stuck around and got him back to bed sooner.

Like I said, knowing what is the right thing to do, and the wise thing to do, is hard to see and act upon at 2:00 AM.

At 4:00 AM I put Grandpa back in bed for the second time in those fours hours since midnight. I’m sorry to say I didn’t do it with gentle affection. I roughly deposited him in bed, and he started to struggle. Which was to be expected. One thing is sure in midnight disasters: I don’t know what I should do and I do know what I shouldn’t do–and so I do what I know what I shouldn’t do, ending up with the results I knew would happen. Then I don’t know if I am more mad at Grandpa or myself. At least I should have known better

So it is 4:00 AM and after spending four hours keeping himself awake Grandpa appears to be still going just as strong as he was at midnight. As best as I can tell he has only had two hours of sleep for the night (and myself no better). Sometimes I wonder how an eighty-year-old man can do it. You would think shear exhaustion would set in after two hours, and certainly after four. But at this point it was clear the night had become a complete disaster and unmitigated disaster, and there was no possible way I could remedy it. Not only was the night shot, but it was now guaranteed that Grandpa would be a disaster for the following day, which meant I had another 12 hours to slog through before I had any chance at recuperation. My choice was leaving Grandpa and getting maybe two hours of peace and quiet–if not sleep–somewhere else in the house before the next twelve hours started, or else staying with him and listening to his monologue until dawn broke.

There didn’t seem to be much of a choice.

I left and went downstairs to try to get what sleep I could on a piece of furniture. I slept maybe two hours. When I woke I went back to check on Grandpa and found him now sitting on my bed, still fiddling with things and muttering to himself, the room in even greater disarray than when I had left. By all appearances he hadn’t slept in those two hours.

And thus began the bad day.

The lack of sleep rendered Grandpa completely mindless. He was effectively incapable of eating, drinking, or moving himself about the house all day. Each meal became a great effort to get him to eat something. At breakfast he drank half a cup of coffee and dumped the rest on the floor. He was not even able to get a spoon into his mouth, so I had to hand feed him his breakfast. He only ate half a bowl, and refused any more. So I carried him into the living room and put him on the couch. He got off the couch and spent most of the morning on the living room floor, sleeping some. At lunch I wheeled him to the table in the wheelchair and laboriously managed to get him to eat most of a small tub of pudding and a small tub of chicken and noodles and vegetables. It was a process where every spoonful was a victory. At supper I managed to get him to eat a few spoonfuls of spaghetti and meatballs, a few sips of coffee, and a few bites of cake. That was all. I took him back to the couch, which he left and ending up sleeping on the floor for a good part of the evening.

If I was lucky, I got 500 or 600 calories into him all day and maybe 8 or 12 ounces of liquid. It was all expected–the day didn’t turn out one bit different than I anticipated. After awhile, you know how some things will go. Hopefully he will do much better tomorrow, and make up for what he lost today.

I survived the day okay. It is the second day after a bad night which kills you. Tomorrow will be tough.

But there is one good thing. Grandpa doesn’t have the strength to do two bad nights in a row. That is one thought I try to console myself with, when a sleepless night turns into morning, and a bad day dawns.

There are better and worse periods with Grandpa. The broad picture is a downward spiral, but within that there is the rhythm or randomness of daily life. From the perspective of now I had a time (of weeks, maybe months) where Grandpa was better in his night time activity. His number of midnight trips were less and accidents were rare. I even started to think that maybe I no longer needed the linoleum I had crudely laid down on the bedroom floor to make the midnight messes easier to clean up.

Such was my delusion.

Last week, or somewhere thereabouts, we started our descent. It started with Grandpa being less prompt, efficient, and agreeable for the midnight bathroom trips. He would wake up and moan and groan for ten or twenty minutes before being agreeable the needed trip to the bathroom. Or, we would go and then he wouldn’t want to go back to bed. Or some variation.

This week we were back to messes. Two nights this week we ended up with a lake of urine on the bedroom floor, and once with the hall carpet soaked. Twice it was because of diaper failure. (I have upgraded what type of diaper I use because of plentiful past failures of this type, but no diaper is completely fool-proof). Once it was because Grandpa got out of bed and decided to get his diaper out so he could go pee–and he got mad at me from stopping his impromptu urinating on the floor. Contributing to all is Grandpa’s increasing inability to make prompt trips (or even remembering to complete the journey) to the bathroom. The mess in the hall was because he made it halfway to the bathroom and ran out of steam/forgot where he was going.

Midnight crabbiness is another thing on the rise. On Grandpa’s part it is at least due in part to his increasingly muddled state. If he can’t comprehend what I am trying to do (or how it well help him do what he wants to do) then I am just persecuting him. He doesn’t understand why I am always dragging him down the hall, making him go through doorways, and making him sit down, etc. I’m just manhandling him for no reason. And, for my part, an increasingly unhelpful patient (and increasingly lengthy and disastrous midnight ganders) marks an equal increase in my lack of patience.

For myself, I feel caught between a rock and a hard place. If Grandpa can’t understand what I say or what I am trying to help him do, why try? If he can’t remember that he needs to go to the bathroom a minute after he has got out of bed, why take him? But maybe if I explained things a little more he would understand. Or if I was a little more patient and slow we could make it to the bathroom. What could I be doing? What should I be doing? Such are the unanswered questions that come in the middle of the night when the minutes grow long, and there is no sleep in sight.

By default, my normal activity is to offer Grandpa assistance if he seems cognizant of a need to go to the bathroom and is willing to accept help. If he gets out of bed apparently unable to recognize his own need, or if he starts to become contentious about my assistance, I simply let him be. If he gets out of bed and starts opening dresser drawers or moving stuff around the room I may ask him half-heartedly, “Do you need to go pee?” or I may not. A year ago such a question would likely prompt a “Yes, I need to go!” at which point I would take him, he would do his business, and we’d both get back to bed. Now that question could get a “No, not now,” (even if it really is yes,) or, “Uh . . . maybe. I don’t know.” Even a “Yes,” doesn’t mean he will go. Often enough I’ve taken him to the toilet only for him to sit there for two minutes, then get off–only to really have to go ten minutes later. Or he has already gone and his diaper is wet and the entire trip was to no effect. Or halfway to the bathroom he stops and says, “Jeez, why are you dragging me along like that–let me go!” Or we get to the bathroom and he grabs hold of objects and refuses to enter, saying, “What the hell are you trying to do?”

The entire act of taking Grandpa to the bathroom is beginning to feel pointless. Half the time it seems he has already done everything he needs to do before we get there. The rest of the time he has already done half of what he needs to do (so the diaper already needs to be changed) or he does nothing and ends up wetting himself ten minutes later after we’ve left the toilet. Then add on top of that Grandpa getting crabby at me because I’m hustling him along (or trying to get him to go back to bed) and the attendant desire in me to say something back, which I shouldn’t, and in the end it feels like the best solution is to just lay in bed and do nothing.

That might sound obvious, but life isn’t quite that simple. First, it feels like a concession to my lack of patience and forbearance that I’m doing nothing because I disillusioned by the pointlessness and trying to avoid becoming angry over Grandpa’s irritable refusal of my less than perfect help. So I lay there and wonder if I am doing what is best in a bad situation, or doing what suits me best in a bad situation. Second, I lay there and wonder if this is really the best even for me. Why everything worked so well before was because I could get Grandpa to the bathroom promptly, he would empty his bladder, and then we would both get back to bed in quick order and be able to fall back to sleep. But now his failure to use the bathroom means that he gets out of bed and simply becomes a derailed train careening about and making sure neither him no I get sleep. Is there something I could do to keep him from becoming a midnight train wreck. Anything besides just lying in bed?

I haven’t come up with any answer. Maybe some day I will find a better answer. Maybe this is just how it will be.

But there is the cost in lost sleep. Some times it is a half hour. Some times an hour. Sometimes more. Last night Grandpa got out of bed at 11:00 PM probably because he needed to go to the bathroom. In the following three and a half hours he sat on his bed and talked incoherently, opened dresser drawers multiple times, sat on my bed and talked incoherently, bumbled and moved things about the bedroom, and finally ended up on his hands and knees in the corner by the door, completely lost–not knowing where he was, what he wanted, or where he was going. By that point he was finally so exhausted that he agreed to my suggestion to going back to bed. He was so exhausted and confused I had to physically dragged him back to bed. It was not the first time in those three and a half hours that I had put him back to bed, but it was only then that he finally stayed there, and fell back to sleep.

At 7:00 AM we were up for the day.

It is easy to think, “Woe is me.” But I was reminded earlier this week that however hard it is on me, all of this is much harder on Grandpa. If it is a form of misery for me, it is double the misery for him. As much as I suffer, it ought to give my compassion for Grandpa. Worse than a few hours lost sleep is the sleep lost along with not knowing where you are going, what you want, or where you are, and then pissing yourself on top of it. I have the lost sleep. Grandpa has that and everything else besides.

I was reminded of in the middle of the week. I had taken him to the bathroom sometime in the morning and sat him on the toilet to do his business. On my leaving he promptly got of the toilet, turned around, and urinated all over . . . everything. A little later I was back in the bathroom doing cleanup from the disaster. Grandpa stood and watched, and said in absolute misery, “I should just find a bridge to throw myself off. I haven’t done anything productive in a long time.” The comment, and the reminder of his misery, brought me up short.

The New York Times recently had another article on Alzheimer’s. The article covers efforts underway to develop methods of detecting Alzheimer’s earlier, and treat or possibly cure it. From a scientific perspective what the researchers are investigating is interesting. But sprinkled in with all the information about the progress of research are the personal stories of people suffering with Alzheimer’s and that was of more immediate interest to me.

About the progression or suffering of Alzheimer’s, the article told me nothing new (though perhaps some of you will find those aspects educational) but did remind me of things that I find depressing. Phrases like, “It raises the possibility for me that this is a genetic disorder that starts early in life,” are only grim statements which confirm my own thoughts. The common reaction, at least of people not closely associated with those suffering from Alzheimer’s is that the disease is one which comes on fairly suddenly in old age. But, as it is said in the article, “Researchers think that the brain, like other vital organs, has a huge reserve capacity that can, at least for a time, hide the fact that a disease is steadily destroying it.” I think that for decades before a person begins to show very noticeable impairment from Alzheimer’s they are actually suffering from an unnoticed cognitive decline. Again, quoting the article:

If Dr. Mayeux asks family members when a patient’s memory problem began, they almost always say it started a year and a half before. If he then asks when was the last time they thought the patient’s memory was perfectly normal, many reply that the patient never really had a great memory.

For everyone aging brings on a less flexible mind, and some people have greater difficulty learning or understanding certain things–all without developing Alzheimer’s later in life. But are there signs of Alzheimer’s that reach back into middle age, and even youth? I find myself struck by how the mental frustrations and difficulties of my Dad and Uncle Kevin are a very eerie shadow of the progressive weakening in Grandpa which brought him to the place he is at now. Dad and Kevin have difficulty learning new things, are easily upset by change, and easily confused and overwhelmed. One part of me wants to simply attribute such thing to their long-standing personalities and the fact that they both are simply starting to approach sixty–so what can you expect? But what comes first, the chicken or the egg? Perhaps even in early youth amyloid plaque was beginning to build up in their brains and though their brains’ reserve capacity compensated in their young adult years, nonetheless their minds felt a strain in coping with things other people did not, and so their personalities developed an aversion to those things which so inexplicably strained them. Only now is the reserve of their brain capacity starting to fail so that both my Dad and Kevin are beginning to develop what almost seem like pathological aversions and inabilities to deal with certain things.

Then I look at myself and also wonder. I have a very pronounced tendency to forget words, and a failure to articulate properly. Further, I realized recently that my penchant for using a wrong word, (sometimes completely wrong, sometimes just not quite the right word), or a slightly weird turn of a phrase–for which I am rather famous for spontaneously producing at our house. All of this is because when I am going along in the conversation I grasp from some verbal thing–whether it be a word or some colloquial phrase–and I can’t quite get it, so I just keep going and spit out something that feels about right.

The results can be quite funny, or embarrassing, sometimes, especially the more involved or animated I am in the conversation as mangled phrases and incorrectly used words begin to pile up and lend a rather surreal air. And does it really mean anything? Not all of us are great conversationalists. Just because we might accidentally say, “Lick the cake and eat it too” when we meant to say, “Have the cake and eat it too” or use the wrong word when using a slightly unusual word, does it mean that all such people will end up with Alzheimer’s?

No it doesn’t. There can be many, many causes of verbal clumsiness. And it may be that whatever is the root of my verbal mis-fires has nothing to do with the genetic disposition to Alzheimer’s in the Purdy blood. But I did find it very striking that Grandpa’s verbal failures could have such a resemblance to mine–forgetting a word, substituting, inserting a wrong word, or turning odd phrases. Of course Grandpa has declined much in the space of a year, and I am still who I am. I don’t think my slight speech difficulty is a sign that I will be crippled from Alzheimer’s in ten years. But is it a benign manifestation in my youth of something that will slowly become worse until at the age of seventy I am sitting on the couch babbling nonsense?

Maybe. I don’t think anything is as straight-forward in life as any of us might imagine, and it is easy to over-simplify life, but in reading about Alzheimer’s, and seeing how it has progressed in someone else, does make you wonder.

Such thoughts can be grim and depressing in an abstract contemplative sort of way, but the little tid-bits of personal stories struck me in a emotionally immediate sort of way. Now more than ever I could see Grandpa very close to those people in the end stages of Alzheimer’s and it was all the more awful to read things like,

Her mother, 78, is in a nursing home in the advanced stages of dementia, helpless and barely responsive.

“She’s in her own private purgatory,” Ms. Kerley said.

Patients’ agitation and hallucinations often drive relatives and nursing homes to resort to additional, powerful drugs approved for other diseases like schizophrenia, drugs that can deepen the oblivion and cause severe side effects like diabetes, stroke and movement disorders.

The disease is named for Alois Alzheimer, a German doctor who first described it in Auguste D., a 51-year-old patient he saw in 1901. Her memory, speech and comprehension were failing, and she suffered from hallucinations and paranoid delusions that her husband was unfaithful. Unable to finish writing her own name, she told Alzheimer, “I have lost myself.”

She died in 1906, “completely apathetic,” curled up in a fetal position and “in spite of all the care and attention,” suffering from bedsores, Alzheimer wrote.

A century later, patients still die in much the same way. Although Alzheimer’s itself can kill by shutting down vital brain functions, infections usually end things first — pneumonia, bladder infections, sepsis from bedsores.

Ms. Latshaw, whose dementia was diagnosed in 1991, has not spoken in four years, and she can no longer smile. But she locks eyes with visitors and will not let go.

“There is still something alive in there,” said her sister, Fritzie Hess, 69. “I’m convinced of it.”

The family believes that, at least some of the time, she still understands them. They speak to her as if she does. She is with them, and yet gone, and they miss her terribly.

In an interview in the summer of 2006, Ms. Kerley described her mother this way: “She’s completely withdrawn in herself. She hasn’t recognized us for a few years. Basically she hums one line of one song over and over again. She seems to be stuck somewhere in her life between age 4 and 5.”

Ms. Kerley said she and her son Michael, then 21, visited every week or two.

“She loves getting her back rubbed, being smiled at, being hugged,” Ms. Kerley said. “She doesn’t know who we are. We’re going for us, not for her, because she doesn’t remember us the minute we walk out the door.”

Such vignettes are awful beyond words especially as I see Grandpa spiraling before my very eyes to the place where “He love getting his back rubbed, being smiled at, being hugged. He doesn’t know who we are, because he doesn’t remember us the minute we walk out the door.”

Perhaps most troubling for me was the words, “A century later, patients still die in much the same way. Although Alzheimer’s itself can kill by shutting down vital brain functions, infections usually end things first — pneumonia, bladder infections, sepsis from bedsores.” To a person remote for the task of tending an Alzheimer’s patient this information means little. To me, any one of those listed deaths read as a failure in care. The abstract logical part of my mind said you can give the best care possible any someone might contract and die from pneumonia, bladder infection, or sepsis from a bedsore. But in that little paragraph I felt I had seen a brief glimpse into the future, and in that future I saw myself struggling to accept the fact that I was not capable of preventing those things, and that they had happened was not a testament to the failure in my care.

If you wake up one morning to find someone dead from a heart attack or stroke you might feel sorry, but there was nothing you could do. Such death is swift. But sepsis from a bedsore–if you are the caregiver what guilt will you feel from that. Even if advanced age and paper-thin skin means bedsores are almost inevitable, how easy is it really to shake a sense of responsibility?

I can only say, “God give me the grace.”

It is very worthwhile to read the entire article, as it gives both a general understanding of Alzheimer’s and also educates on where the direction of treatment appears to be headed.

What follows is two slices of life, nothing more. It is, perhaps, nonsensical in nature. As for Alice in Wonderland . . . that’s what it can feel like around here.

****

One night, early this week I think, I was busy rushing around the kitchen trying to make supper. Grandpa was busy doing his thing. In the evening this usually means either messing around in the kitchen while I work, or else sitting on the couch and calling for someone to tell him if everything is set to right, and complaining that the pillows aren’t working. This evening he was sitting on the couch, but around the halfway point in supper production he had to go to the bathroom, so I stopped what I was doing and got him to the toilet. I then returned to the kitchen where I kept half an ear on his continued muttered complaints about the (to him) incomprehensible and malfunctioning nature of the world.

Finally a plaintive squawk became loud enough that I decided it was time to go check on him. A quick dash away from the food on the stove to the bathroom and I asked, “What’s the matter?”

“I can’t get this to work right,” he said, holding up the carefully folded hand towel.

Seeing that he was done using the bathroom I said, “That’s okay, I’ll take care of it for you.” I hung the towel back on the rack. “There you go. You’re all done,” I prompted, and then rushed back to the stove.

Grandpa didn’t follow, and as I worked with the food on the stove I heard continued befuddled mumbling about things not working and not being where they’re supposed to.

“Everything is fine,” I yelled from the kitchen. “You’re all done!”

“What?” came back the alarmed shout. “Who died?”

“Nobody died!” I called back.

“Oh. You said nobody died.”

Short length of silence.

“Well, okay. Let’s go,” Grandpa’s voice drifted down the hall, obviously talking to himself, or, more precisely, to his imagined companions. “Come on, girls. Come on.” Brief pause. “Come on, girls. Girls!”

“There isn’t anybody, Grandpa,” I called out. “It’s just you, me, and the trees.”

“Yeah. Yeah . . . I guess that’s what I meant, the trees,” he said.

“I don’t know–” I heard his voice beginning to move down the hall and then caught a glimpse of him crawling past the kitchen entrance on his way back to the couch. “I don’t know anything. Money isn’t worth anything, [uncertain] isn’t worth anything, and I don’t think I’m worth anything,” he finished.

****

Wednesday Grandma had an eye exam. So long as the weather remains mild, when Grandpa has to come along for some appointment of Grandma’s, he and I stay in the car. It saves him from the stress of going into a completely strange environment, and saves me from making a scene by carting him around, or being required to loudly ask him if he needs to go to the bathroom when he gets out of a waiting room chair to start wandering. I don’t mind waiting in the car as it is more private than a waiting room and is a place where I can do whatever quiet things I want to get done. Grandpa doesn’t mind either, so long as Grandma doesn’t take too long.

But Grandpa’s patience lasts only about an hour, after which point he begins to get fidgety. I can keep him occupied for a little longer if I bring along my MP3 player which has the entire audio Bible on it. If I let him listen to that he can remain somewhat content a little longer.

Then there is always the bathroom issue.

Grandma’s eye exam ended up taking nearly two whole hours. That was far longer than Grandpa cared to stay in the car, especially when somewhere around an hour and a half into the wait he had to go to the bathroom. He may have needed to go before then, but it was only at that point which it became pressing enough that he became articulate.

This, of course, brought about a bit of a problem. Grandpa wears diapers, so when he finally said, “I have to go pee-pee,” I told him, “Then just go. You have a diaper on, I can easily change you when we get home. Don’t worry about it.”

Unsurprisingly, such an explanation wasn’t satisfactory. Grandpa and his bathroom needs and usage is no longer much about cognizant rationalization and mostly the fragmentary remains of deep seated habits. The result, as I have already chronicled, is a firm compulsion to not soil himself, even when this means pulling down his diaper and peeing on the carpet, in the sink, or on the table. There is no sense in it, and so no possible way to reason with him about it. He simply has to go, and doesn’t want to do it on himself.

“I got to find a bush or some place,” he said, and started scrabbling to find some way to get out of the car.

“Grandpa, you don’t want to do that,” I try to explain as gently as possible. “You don’t want to get arrested for indecency or something,” I said, trying to jest. “Just let it go. Don’t worry about it.”

We were sitting in a parking lot right along the main drag of 434 with cars whizzing by, and even if we should contemplate such an idea the only nearby bushes were the landscaping in front of the building which neither the proprietor nor the coming and going customers would appreciate us watering. I felt sorry for Grandpa, knowing that he must have to go very badly, and doesn’t really understand my answer beyond the fact that I didn’t want him to do what he wanted to do. For one second I thought about getting him out of the car and taking him into the office to use their bathroom, but I quickly played that thought out: “Hi, this decrepit old man who can hardly walk who I am dragging about really needs to use your bathroom, or perhaps we’ll just end up peeing all over your floor. It happens sometimes, I’m sure you won’t mind.” No, we wouldn’t do that. Grandpa would just have to suffer.

“I really have to go,” Grandpa said.

“I’m sorry,” I said. “You can’t get out. It’s okay, don’t worry about it.”

“I’ll just do a little bit,” he said, finally managing to get the door open.

So I got out from the driver’s seat and went around to put his feet back in the car, explaining that we can’t do that, he’ll just have to wait, it doesn’t matter and he doesn’t have to hold it in. Then I get back into the driver’s seat and electronically lock us in. At this point I’m trying hard not to laugh at the absurd stupidity of it all. Who would have ever thought I’d be locking myself and my grandfather in the car so he’d pee himself. What a cruel sick thing to do, and yet somehow you find yourself in the place where it seems the least unacceptable option. How does life get like this, you wonder.

“How do you get out?” Grandpa insists, still trying to work the door, and I keep trying to calm him and explain to him why it has to be this way. “Yeah, I understand what you’re saying,” he finally says (whether he really did or not is a different matter) “It’s just that I . . .”

“You don’t want to pee yourself,” I finish for him.

“Yeah,” he said, though the thought probably was not so clearly fixed in his mind.

We both lapsed into silence until a little later Grandpa said, “It’s strange, I don’t know, but the urge to go isn’t so bad anymore. I don’t need to go, so you don’t need to worry about it.”

I didn’t bother to explain to him why suddenly he didn’t need to go anymore. It was sufficient that he was no longer in distress. When we got home I could easily change him.

When we did get home we ran into a little more difficulty. The house is a split level, with the garage as part of the bottom, so there isn’t a lot of walking that has to be done to make it from the car to the couch upstairs, but when I helped Grandpa out of the car he said, “Boy, my legs feel so weak I don’t know if I can hold myself up.” This is not an unusual phenomena with Grandpa. If you’ve ever ridden a long time in the car you know how when you first get out there is some momentarily stiffness that can leave you feeling just a bit weak. For Grandpa sitting still even a much shorter time brings the same problem, and since he is already weak this leaves him feeling just about unable to stand, or walk.

I thought maybe I could coach him into the house, but when he wouldn’t budge with a little forward prodding and simply leaned on his walking stick and looked at the door into the house as if the distance were a million miles away . . . I knew getting him there would be a huge struggle. I decided it wasn’t worth the fight.

“Okay,” I said. “I’ll carry you.” I scooped him up in my arms and headed into the house, and started up the stairs.

“No, you’ll hurt yourself,” Grandpa protested. “I don’t want you to injure yourself.”

“I won’t,” I said. “It’s no problem. Don’t worry, I can do it easily. Want me to show you? I can sing and dance.”

So I sang “La-Da-De-Dah” like some grand opera star and sort of hop-danced the rest of the way up the stairs and over to the couch, where I carefully deposited him.

As if life wasn’t crazy enough, I have this urge to make it crazier.

And that’s a slice of life with Alice in Wonderland.