Category: Uncategorized

It is difficult, and perhaps pointless, to attempt to answer the question, “What is the worst thing about Alzheimer’s?” But I think the saddest part–and one which many people don’t even consider–is how aware a person can be of their failing abilities. This awareness does vary greatly from one person with Alzheimer’s to another, but I think all are more aware, to one degree or another, than most people suspect. To my thinking, if you don’t realize you’ve lost something, that will soften the blow of the loss. On the other hand, if you remember very well how you used to be able to walk, use the toilet, and feed yourself–that memory makes the loss of such things all the more painful.

For me, I can bear Grandpa’s increasing loss of his abilities well enough. It is life, and you live with it. But it is when he, on rare occasions, articulates an understanding of what he has lost, and how miserable that makes him, that I feel very sad.

A few days ago I was sitting in the living room with Grandpa, practicing my guitar playing. Grandma was moving about the house doing stuff. Whenever Grandpa is aware that someone is doing something, he wants to know what they are doing. So he attempts some form of the question “What are you doing?” or “What is going on?” . . . and often doesn’t understand the answer he gets, much to his frustration. Such was the case this time. Grandpa insistently queried Grandma about what she was going, Grandma gave brief and perhaps somewhat vague answers, and Grandpa said, “What? What did you say?” (It is his understanding of words that is failing, not his actual ability to hear.)

After a bit of confused sputtering Grandpa settled back with a disgusted sigh and said, “I don’t even know why I try. I can’t even remember my own name anymore.”

That may not be (quite) literally true, yet, but the plan statement by Grandpa himself revealed a self-awareness that was very saddening. It is bad enough to not remember your name, and not remember you ever had one, or what one is. It is worse to remember that you had a name, know it is important, and know you once remembered it, and know that you no longer do.

I know it is not the only thing Grandpa realizes he has lost, but it is always a sad to hear him recall his own condition.

***

In other, unrelated, news, I am of the firm opinion that nutrient drink feels vile. I buy the “plus” version for Grandpa because he needs the extra calories, and maybe because the manufacturer crams more nutrients into the same amount of liquid this contributes to the vile texture. In any case, as Grandpa spills his drink more and more, I am becoming intimately familiar with the sticky slimy, slippery, gooey feeling of nutrient drink. Given how it feels on my hands, I don’t know how anyone can stand to drink the stuff. The texture on my hands is nearly enough to make me gag–I can’t imagine choking it down my throat.

That said, I’m glad Grandpa seems to be of a different opinion. He drinks the stuff happily enough, and with 350 calories per 8 oz. it is probably the one thing keeping him from starving himself to death.

Here is another good article about caregiving. In a sense, it distills down a lot of what I have experienced through the course of this blog. Looking back on my own experience, I find it interesting to see how I intuitively picked up on some of the points the author raises. As a straight-forward, no-nonsense article it is an excellent read for anyone in the caregiving situation.

On the previous post Pam commented:

My mom and I are at the water-temperature-controlling stage. You’ve done a great job describing what’s to come, and a loving, respectful and pragmatic way to approach those stages to follow.

And Deanna also observed,

I have just finished reading your March 24th entry on bathing. I intend to read all of your back entries as time allows. My husband is now living at a Veterans Home in Georgetown, Ohio. During the years I was caring for him, I experienced so many of the challenges you have described with your grandfather. I am 13 years younger than my husband but not physically strong enough to do the things you are doing, hence the reason he could no longer be at home.

These comments describe the situation well. In my last post I clearly described how I handled Grandpa’s problems with bathing. I hope what I said will help other people understand the process and perhaps even help them in caring for someone with bathing trouble. But it is also true that my method of dealing with some problems is not an option for most people. I can easily pick up my Grandfather and put him in the shower. Most people can’t, and for that reason my solution isn’t very helpful. If you can’t pick someone up and put them in the shower, what can you do when they get that incapable of helping themselves?

The answer to that depends a lot on your particular circumstances so there is no one nice neat little answer to this big problem (sorry). But when I get some more free time I would like to share some more from my experience with this bathing issue–some solutions that hopefully will be helpful even for people no able to pick up and carry the person in their care. For right now I am going to provide two links to articles about dealing with Alzheimer’s and bathing. They are good reading for anyone who is dealing with this difficult matter.

The first article is titled Tips . . . On Bathing and is just that. The second article is called Reflections on Reflections: Bathing and Alzheimer’s Disease. Some of what these articles say repeats observations I have already made, but if you are a caregiver they will give you an additional perspective you may find very helpful.

Bathing can be one of the most difficult parts of caregiving and if you are in the situation where you must work through it, you’ll need all of your wits about you and all of the good advice you can get.

Grandpa’s trouble with bathing has followed the same trajectory as the rest of his life since Alzheimer’s began affecting him: First he needed a little help, then he needed more, and finally he needed a lot. At this point we’ve nearly reached the end of the road with his bathing situation. That is, the next step is being bed-ridden and getting a sponge bath.

In a way, this little aspect of his life gives a mini-picture of his decline. When I first came to care for Grandpa about two and a half years ago all he needed help with was getting the water the right temperature–he couldn’t get the right amount of hot and cold water himself, and particularly if it needed to be adjusted while he was in the shower he ran the risk of freezing or scalding himself if he turned the dial the wrong way. This meant that when I first arrived his dignity–and his independence–were mostly intact. Grandpa would decide it was time for him to take a shower or bath, I would draw the water, and he would undress and get in and wash himself. When he was done he would get out, dry himself off, and get dressed. However, even here he was beginning to have trouble. For, while he could get his clothes off, sometimes getting them all back on was a little more difficult. But even if he couldn’t button up his overshirt, he could at least get himself dressed to a point where he was dignified before he had to ask for help.

That was where we started. I knew that everything would be going downhill from there, and I dreaded it. Grandpa was very sensitive about both his dignity and his modesty and I could see all sorts of nightmare situations where the necessity of bathing and Grandpa’s deteriorating condition would come to a head on collision with that dignity and modesty. Two and a half years ago I looked forward with dread to the prospect of traveling that path. Now I look back, having traveled it. And I will tell you, while it wasn’t easy, we made it.

My driving concern in tackling this area of care-giving was to keep it from becoming a disaster. I didn’t want every shower to become a fight, and every need for bathing a major war. This required a deft touch–and at least the first half of this process I chronicled in some detail in the earlier pages of this blog. But here I will give a complete recap.

Grandpa fought the changes hardest in the beginning. He really didn’t want me around when he was naked but this caused all sorts of difficulties when he no longer could make it from the point of being fully dressed to undressed and in the shower. But instead of asserting the obvious, I let him work through the matter at his own pace. That is, instead of insisting, “Grandpa, you can’t do this by yourself anymore so I am going to help” I let him try to do it himself and when he became completely confused and stuck and said, “I need help!” I came to help him. He still didn’t like it, but at least he didn’t feel like my help was being forced on him. By this process we slowly worked from a situation where I was always out of the bathroom, to where I was there to help him through all the steps to getting into the shower. In the abstract Grandpa would have had a lot less “problems” if I had insisted on dictating to him, but the reality is we had a lot less fighting and less real problems because I let Grandpa go through the slow process of realizing he needed help. But it required a lot of patience and tongue biting.

The next problem was that as Grandpa grew increasingly unable to keep track of time and dates, and as it became increasingly difficult for him to wash himself, he came to dislike and avoid bathing more and more. I had to start suggesting that it was time for a shower or bath. And Grandpa began insisting, “Didn’t I just have one?”

Answer: “That was last week, Grandpa.”

“Well, I can’t be that dirty. It wasn’t that long ago.”

This was an opportune time for argument as Grandpa legitimately was intimidated by the prospect of bathing himself, and it also honestly felt like in his mind that he had just done it “yesterday” so to him it seemed like I was trying to force a shower on him every time he turned around. This could easily spiral into an argument of “I don’t need a bath” and “Yes, you do.” At first I managed to avoid this by playing a game of good cop and bad cop. I was the good cop, and Grandma was unwittingly the bad cop. When Grandpa needed to wash I would suggest that he take a shower. Grandpa would then indignantly deny that he needed one. Grandma would then get impatient and say, “Yes you do. Go take a shower!” Grandpa would then bluster and fume at Grandma, and I would tell him we would give him a shower, “Just to make Grandma happy.” He would rail about how unfair and demanding Grandma was, and I would go on about how we needed to keep her happy, and he would kind of grumbling agree with that, so it all became a matter of keeping Grandma happy, instead of an argument over whether he really needed a bath or not.

But that was always a dicey and stressful situation for me, because there was no guarantee that he would always be amenable to that sort of persuasion. Grandpa only had to decide he was sick of taking a bath “every day” (in his mind) to make Grandma happy and then I would be in real trouble. So I realized we needed a more fixed schedule which Grandpa would find appeasing and which I could use to persuade him. As a result, Saturday became “bath day.” It was only on Saturday when Grandpa had to take a bath or shower. Thus when he would say, “Didn’t I just take a bath?” I could say, “No, Grandpa, that was last Saturday. You only take a bath on Saturday, remember?” Then he would have to grudgingly concede that it was only mandated for Saturdays, and if it was indeed Saturday then it must be time for his bath. I discovered the way I could get him to come the most agreeably was to say, “It’s Saturday, Grandpa. That means it’s bath day. Do you want to take your shower now?” And he would always say, “It is? I don’t want to take it now. Let’s wait until later.” And I would say, “Okay, we’ll do it in a little while.” Then Grandpa would sit there about a minute, thinking about the prospect of a shower hanging over him and about a minute and a half later he would say, “Aaah, we might as well do it now and get it over with.”

It’s all psychology, folks.

However, as well as this particular trick worked for a time, I knew it wasn’t a permanent solution. As it became increasingly unpleasant and difficult for Grandpa to bathe I realized there would eventually come a time that whenever asked–no matter what the stipulations or circumstances–Grandpa would simply refuse to take a bath or shower because he would find the prospect simply overwhelming. Through my time of caring for Grandpa I have always tried to give him as much dignity of choice as possible. It is one of the fundamental things that makes us feel respected and valued when some asks our opinion and abides by our wishes. But the very ability to make decisions (and certainly rational decisions) is the very thing Alzheimer’s destroys, so in caring for Grandpa I’ve had to maintain the delicate balance of giving him as much ability to make a decision as possible and yet being prepared to gracefully slide into the “no questions asked” mode. It was with great relief when I finally made the complete switch. Knowing when to make the switch–when Grandpa wouldn’t be terribly offended and hurt–was a matter of gut instinct. It came to the point where I realized being asked whether he was ready for his shower only agitated Grandpa and he was forgetful enough to the point where I could just take him to the shower as it was of course what we were going to do and the fact that we hadn’t discussed it could slip past Grandpa’s mind entirely.

At first I found a very “devious” method of getting him into the shower. Back when he was still using the toilet some of the time, sometime shortly after breakfast he would need to go pee (the morning coffee coming through). I would take him to the bathroom and set him on the toilet. As he was using the toilet I would start up the shower and get things ready. Then when he was ready to get off the toilet, I would help him get up, get undressed, and get into the shower. Grandpa never thought to question it. All the cues were there: He was in the bathroom, the shower water was running, he was in a partial state of undress having gone to the bathroom–so of course we finish getting undressed and climb into the shower.

It’s all psychology, folks.

About the time Grandpa was no longer able to travel to the bathroom was the time he started using the wheelchair. We no longer had the cover of the pee trip to the bathroom, but I found at that point it was no longer needed. I would get the shower all running, and when Grandpa finished eating breakfast I would wheel him to the bathroom door, help him up, and start getting him undressed. Any slight hesitation on his part would be met with “We’re doing your shower. Here’s your washcloth. Hop in.” At which point there was nothing to do but hop in.

This ended any difficulty with arguments about taking a bath or shower. But it wasn’t the end of the actual physical difficulties in taking a shower.

Fairly early on (maybe at the very beginning, I can’t remember clearly) I started washing Grandpa’s hair. It was one of the first things he forgot to clean for himself–his head being something he wouldn’t see–and he was readily agreeable to me washing his hair. Washing other parts of him were a different matter entirely, and this started to become an issue as he began to forget to washing increasingly more of his body. When you can’t remember what you have washed, or what you need to wash, or even what you’re supposed to be washing–well, it’s very hard to wash. As the became a problem at first I helped Grandpa through the process verbally. “Okay, now wash your chest. Don’t forget to wash . . .” and so on. While this worked for a time, it was a rapidly failing solution. Quickly following the problem of forgetting what you have washed or need to wash is the problem of not understanding what someone is telling you to wash. You’ve hit the end of this method when the instruction, “Okay, Grandpa, now it’s time to wash your legs,” is met with the response of, “Yep, I’m working on that,” while he vigorously scrubs the side of the tub. There comes the time when if something is going to be done, you have to do it yourself.

From simply washing Grandpa’s hair I moved to also washing his back. It was an easy progression as it can be hard to wash one’s own back, so I say, “Here, let me get your back for you,” and there doesn’t really seem to be any reason to object. Then, once I got Grandpa accustomed to my hands on his back, I simply began progressing to wash the rest of him as the natural course of things–and Grandpa gave no objection. Except when it came to the matter of washing his genitals. That was the one catch–that was the point where we couldn’t just ease out of his modesty and dignity. I pretty well knew that Grandpa would have to be practically comatose before he would willingly agree to someone else washing his genitals and events have proved me right.

It is a miserable situation for us both. Grandpa is no longer able to do it for himself, he doesn’t want me to do it for him, and I don’t want to do it for him. But it must be done. And he can’t do it. So I must do it. And it is terribly, exceedingly, awkward. Invariably, the reaction is something along the lines of “What the HELL are you doing?”

What kind of answer can you give to that? “Um . . . cleaning you,” seems completely inadequate. In fact, there isn’t an satisfactory explanation that can be given because so long as Grandpa has a functioning brain cell in his body he will know he doesn’t need someone else cleaning that. There is no explanation, no excuse, that can get around that. So . . . my only solution is to pick my battles. Some weeks I just let that particular aspect slide if I get the sense he is particularly feisty, or inclined to get angry. Otherwise, my general methodology is (a) Do it fast, and (b) distract him.

My typical distraction method is to say, “Okay, Grandpa, it’s time for you to wash your face.” Then, while he is washing his face I quick wash the other end and by the time he realizes what is going on and can get angry I’m all done. Thus a confrontation is (just) avoided. It isn’t fun, but I can just squeak past having a big issue develop over it.

And so I have finally got to the point where I can do all of the washing for Grandpa.

The other issue was getting Grandpa into and out of the tub.

When I first began helping Grandpa I encouraged him to take a bath rather than a shower because I figured it was easier to work with him, and easier on him because he wouldn’t have to stand. But it became clear that sitting down in the bottom of the tub was very uncomfortable and growing increasingly difficult for Grandpa. So we switched to having him stand for a shower. But as he became increasingly weak, having him stand for the full length of a shower started to become unfeasible. So we got a shower chair so he could sit while taking a shower. That was the solution of choice for a long time. But even that solution wouldn’t last forever.

As Grandpa has grown increasingly weaker, it has become ever more difficult for him to step over the side of the tub into the shower. Every weekend it was evident that this was a developing problem and that eventually he wasn’t going to be able to do it. Then, several weeks ago, that day arrived. I got Grandpa up to the edge of the tub and said, “Okay, now step in,” and he couldn’t do it. Physically it was difficult–mentally, he couldn’t do it. He couldn’t understand what I wanted him to do. He held his hands under the water and started washing his face–all while standing on the bathroom floor.

I cajoled. I instructed. I prompted. Nothing unstuck his mind. It wasn’t that I couldn’t physically make him get into the tub. I could. I am physically strong enough that I could practically haul him up by the scruff of his neck and deposit him in the tub. But the fact that I am capable of winning any fight is beside the point. My entire goal is to avoid bath time from becoming World War III–no matter if I am capable of winning World War III every time. And if I am going to physically force Grandpa to do something, it is going to be war, no matter how “gently” I force him.

For that day there was nothing to do except as gently as possible lift one foot and set in inside the tub and then propel him forward and lift his other foot and put it in the tub–all the while explaining what we were doing. Of course Grandpa didn’t understand–about all he could figure out is that I was making him do something. Then I tried to get him to turn around and sit down in the shower chair, and that didn’t work either. He grabbed hold of the shower chair to “make it work” and wouldn’t let go. Getting him to turn around and sit down would have involved prying his fingers off the chair and forcing him to turn around–something I knew would quickly become a wrestling match. So I cut my losses. I had him in the shower–that was good enough. I quickly cleaned him while he stood there, holding onto the shower chair and shouting at the top of his lungs.

We survived, but that little incident made it clear to me it was time to altar the tub setup. The tub had a set of sliding glass shower doors–something that works fine if your are a healthy adult who can bath yourself, but they have been constant trouble for me in taking care of Grandpa. They make it so I can only access half of the tub at a time, which means I’m constantly playing a game of sliding doors to get at Grandpa. With the doors installed I cannot have full and uninhibited access to Grandpa or the shower chair. In short, getting Grandpa in and out of the tub was always an awkward manhandling experience since we’re always dealing with a doorway that only one of us can fit through at a time.

The shower doors had to go. In their place I hung a shower curtain, which I could push completely out of my way. This has made things so much easier for me. Now, instead of laboriously trying to coach Grandpa to step into the tub I can simply scoop him up in my arms and set him down on the shower seat. When I am done showering him I can push the curtain out of the way and start drying him off while he is still resting on the shower seat. And instead of making him step over the side of the tub to get out, I can simply lift his legs and rotate them over the side of the tub so he can stand up directly on the bathroom floor. If need be, I could simply pick him up and carry him away without him needing to stand at all. None of this was possible with the shower doors still installed. I knew there was a reason I hated them.

So, we are now at the point where I am, or nearly am, doing everything for Grandpa. I now can undress Grandpa, pick him up and put him in the shower, wash him, dry him, and pick him up and take him out. Right now he still has the strength to stand while I dress him, but if need be I could also dress him while he was seated. Only when he becomes bed-ridden and unable to sit up any longer will I no longer be able to give him a shower any more.

Having overcome all of these obstacles gives me a certain peace of mind. Having avoided bathing becoming a major and constant source of contention is a great relief for me.

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

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

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

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

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

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

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

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

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

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

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

“Soup or sandwiches?” I repeated.

“Sandwich sounds good.”

“Would like you tuna fish or grilled cheese?”

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

“Grilled cheese?” I prompted.

“No the other one.”

“Tuna fish?”

“Yeah, that sounds good,” he said.

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

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

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

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

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

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

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

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

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

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

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

“You only want a little bit?” I said.

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

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

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

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

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

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

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

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

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

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

“Joel? Hey Joely! Joel!?”

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

“Is that you, Joel?” he called out

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

“I want you to say, ‘Hi, Pa.’”

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

“Good. How are you doing?”

“Just fine. Everything is good here.”

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

“Gene?” (Grandpa’s brother.)

“Yeah?” I said.

“Go lay down.”

Then a little later:

“Ma? Hey mother? Ma?”

“Yeah?” I said.

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

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

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

. . . And that is a snapshot of life.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What followed was a mad scramble.

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

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

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

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

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

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

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

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

Grandpa laughed.

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

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

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

G . . . F . . . E . . . D . . . C . . . E . . . A . . . G. The notes slide down the scale, clear and sharp, except where I flub it.

I’m learning the guitar. If you had asked me four, or maybe even two years ago if I was going to learn the guitar I would have shook my head in disbelief. It has been something of a turn-about for me. I admit I’m a bit surprised, but maybe I shouldn’t be.

There is some musical talent on both sides of my family. My mom’s sister Marianne plays the guitar, and my dad’s father played the piano, guitar, and mandolin. His father played in a band–a trumpet, I think it was. I have two cousins who can play more than one instrument, and I don’t know how many can play at least some instrument. So there is a definite musical lineage in my family, but up until this year I have been a wasteland of that particular talent.

When I was a child my parents tried to encourage me in musical directions. They sunk hard earned money into an electronic keyboard and music lessons, but I partook of them with tepid interest at best and pretty much leaped at the chance to give it up. Not only did it require diligence to practice but it was boring and I really had no appreciation for the music. It had no relevance to my life–if I was going to do something creative I would draw a picture or tell a story or make something. Music, apparently, wasn’t my natural outlet for self-expression.

My first experience with a guitar was as a little child. My mom’s sister Marianne, being a generous aunt, gave us little kids an old practice guitar to play with. I wish I could say that sparked my musical interest, but it didn’t. It didn’t even leave me with a positive impression of guitars, though perhaps through no fault of its own. It was a classical, nylon string, guitar. It may be that I don’t care for the sound of classical guitars. In any case, it was certainly not a quality guitar (hence, children playing with it) and it was surely out of tune. But as a child I didn’t account for all those facts. To me it simply sounded bad, and I couldn’t figure out what anyone would like about a guitar. The impression stuck with me, even though I had the chance to see other people properly play steel-stringed guitars. For me, the first impression when someone mentioned a guitar remained that of a dull sounding thing not pleasing at all.

For many years the guitar remained unfairly stereotyped in my mind, but as I grew older my opinion of music as a whole changed. I began to enjoy listening to music (certainly the first step one must take if one is going to have any interest in things musical) and while I am not now a rabid fan of every musical genre, I do enjoy a variety of music. Sometime in my teens it occurred to me that it would be enjoyable to know how to play a musical instrument. But at that point time, money, and space were all constrained. If I was going to attempt learning any musical instrument I would have to consider it as something more than a “nice idea.” And so my musical ambition languished.

Then sometime in 2007 or 2008 I decided I wanted to learn how to play the guitar. Caring for Grandma and Grandpa had changed the situation in my life and learning a musical instrument seemed like a good way to keep myself occupied, engaged, and learning something new. It seemed, at least, like a symbolic way of saying I wasn’t stagnating. And it helped that I discovered that a basic guitar for learning was (as far as musical instruments are concerned) quite cheap. The idea of sinking a large amount of money into something that would turn out to be only a fantasy after six months was possibly more intimidating than the idea of attempting a musical instrument itself.

For a while I played around with the idea of getting a guitar, and finally in 2008 more definitive intentions began to coalesce. In the fall Grandma heard of my interest in learning the guitar, and immediately suggested my uncle Kevin could give me Grandpa’s old guitar. “It’s just sitting in his attic,” she said. This was news to me. I had been under the impression that Grandpa had sold off his guitar many years ago and its presence in the family was nothing more than a dim memory. So it was with some bemusement, and a bit of excitement, that I received a battered guitar case from my Uncle Kevin in the middle of October. Already Grandma had dug up Grandpa’s old guitar lesson books. Everything was falling into place.

By this time part of my mind knew that the reality of guitars was not represented in the un-tuned and abused object we had played with as little kids. But some part of me still had not shaken those deep-seated memories, because when my fingers brushed across the strings of the guitar they twanged with a clear sweet sharpness that surprised me. “Wow,” I thought. “That sounds nice.” Somehow, learning an instrument didn’t seem like that dull thing of my childhood memories.

So I am learning how to play Grandpa’s guitar. It is a bittersweet experience, in a way. What I have is a piece of history, a piece of Grandpa’s history from a long time ago.

I know very little about guitars, but I am sure this one is not a very good one. Grandpa would not spend a lot of money on himself. The guitar lesson books he bought were used, and I’m pretty sure the guitar was second-hand and second-rate when he bought it also. Now it has sat for years in an attic. The guitar case is worn, and stained, and the guitar itself shows many signs of age. The tuning keys are stiff, and grooves are worn in the fretboard where the strings have been pressed against the frets. The body of the guitar itself is cracked in both the front and back (from excessive drying in a very hot, dry attic, I suspect,) and the wood of the body feels slightly punky in places. It is surprising the guitar sounds as good as it does, but it can still tune and play. It is good enough for me.

The guitar is older than I am. Grandpa’s lesson books now sit on my shelf, the worn covers stating, “The New Mel Bay Modern Guitar Method.” Inside the front cover the names of two previous owners are scribbled out. The completed date scrawled beside the early lessons is from June 1974, seven years before I was born. Flipping through the old lesson books, and pulling out the guitar with its strap, and the spare strings still carefully coiled in their packages at the bottom of the case, is like rummaging through a distant part of Grandpa’s life. When I brush my hands over the strings, touching strings that Grandpa played decades ago, and the notes hum out, it is like I am feeling and hearing Grandpa’s past–a part of his life I have never seen or heard before. A part of his life from long before he became what he is now. A time when he could still learn something that I am struggling to learn. It is somehow quietly sad, and when playing such an instrument it is hard to not think about how time marches on, leaving so many things behind.

At first I was hesitant to practice in front of Grandpa. From my past attempts to share recorded music with him, I already knew he had very particular opinions about what he liked. One song he might enjoy very much, and the next he would proclaim as “terrible” when I might find only a trifling difference in quality. Even more than that, his Alzheimer’s had made him increasingly sensitive to the mood of music. A long, slow piece of cello music would make him feel terribly sad and afraid, and he could not abide listening to it. Further, as someone who had mastered the guitar I suspected Grandpa might be particularly sensitive to someone playing it poorly, and all around I didn’t want to torment him.

I waited until I had mastered something resembling a song before I tried playing in front of Grandpa. It was then I discovered that I was wrong. Grandpa enjoyed listening. Not only did he enjoy listening, but he was highly approving of my learning. I don’t recall having ever discussed learning musical instruments with Grandpa, but for a man typically dour I found him surprisingly positive on learning how to play. It was then I realized that I had touched on something near to his heart.

“That’s a nice guitar,” he said, brightening at what was perhaps my first appearance with it. “Where did you get that?”

“It’s your old guitar, Grandpa,” I said. “Do you remember it?”

“It is?” he said, sounding half uncertain, half confused. “Well, I think it is good.”

I have been playing for a little over two months now. I am learning, slowly, but I have much more to learn. I have no expectation of becoming a great guitar player. I would be happy if I eventually became able to play average songs with average ability. But that is only later, maybe. Right now I have finished learning the first position and I am beginning on learning chords. Right now I hate chords, especially the F chord. The real problem is holding down two strings with my first finger. I can hold down one string with my first finger, one with my second, and one with my third. But holding down two strings with my first finger while holding down one with the other two is presently just about agony to pull off, and we’re not talking about in a musically successful fashion. I’ll never be able to do it, I think. But I am old enough, and mature enough, to recognize the source of that feeling, and how I have felt it every step of the way in this learning process and how each time I have managed to overcome.

I have found it enjoyable to play guitar music. But I have also found the simple learning itself to be enjoyable. It has been a long time since I’ve learned something so completely new. The struggle, the dawning understanding, and the opening of a new world is something in itself. It reminds me of the newness in life, when it can seem like everything is dull and repetitive.

Grandpa listens when I play for him. It would be untrue to say that he listens with constant attentiveness. I sit in the middle of the living room and play. Grandpa sits on the couch. Sometimes he listens while he plays with his magazines, idly folding and tearing sheets of paper. Sometimes he falls asleep as I play. Sometimes he just sits quietly and listens. And sometimes his mind wanders off, perhaps carried by my music to distant memories. There have been days when it seems like my music brings up thoughts. He will interrupt and say, “But what about . . . what about . . .” but then he can’t remember what he was going to say, or ask, and I haven’t a clue. Then there are the times when he forgets what he is doing. One evening he loudly announced, “Where am I and what am I doing?” To which I blandly replied. “You’re sitting on the couch listening to me play the guitar.”

Sometimes he doesn’t know I am playing the guitar, and perhaps is not even aware of the sound. But other times I know he is. He will say, “That sounded good” when I finish a piece. Or if I hit a string badly he will quite seriously (and innocently) say, “Did you hear that? It sounded like there is a goat calling downstairs!” One time when I finished playing “Micheal, Row The Boat Ashore” he spontaneously burst out in the last line of the song (without me having told him what I was playing). Another time when I finished playing “Tom Dooley” he asked me what song that was, and when I told him he said, “Ah. I knew it, and I just kept trying and trying to remember.”

Along with remembering songs, Grandpa still remembers some things about his own time learning the guitar those many years ago. Sometimes when I am muttering or gasping in frustration at some difficulty he will make a comment. One day he gave a little laugh and said, “Got grooves in your fingers, huh?” (Which indeed I did.) Another time when I complained about how difficult it was to learn the chords he gave some garbled statement of agreement. (It sounded like he made some comment about the D chord, but I couldn’t decipher his statement–however, I just now went and looked up the D chord and it does indeed look like a doozy, so it appears that while Grandpa’s mouth didn’t cooperate, he was trying to express a valid statement.)

In the end, in spite of all that is confused for him, guitar music is something he hasn’t entirely lost. It is something he can still enjoy, as one day halfway through my lesson I stopped for a break and he said, “What, are you done already?”

In the end what he wants most is for me to be there with him. Sometimes he expresses it in a way so poignant it is almost painful to see. One day recently I had finished up my playing and began to take my stuff back to the bedroom. Grandpa looked up and saw what I was doing, and his face became sad. “Don’t go. Don’t go,” he said earnestly. “Sit here with me.” He patted the couch beside him, and looked so hopeful and wanting that I couldn’t help feeling a stab of awfulness that he could feel so terribly lonely and in need of company in his own living room. So I left my stuff and just sat there with him for a while.

Today is Grandpa’s birthday. He was born the last day of December 1927. Today he is 81 years old.

Since today is his birthday, I will tell you the story of his actual birthday, 81 years ago.

Grandpa is the sixth of ten children. Grandpa’s brother Doug is about five years older than Grandpa and what I am telling you is primarily my reconstruction of what he told me about Grandpa’s birthday. Doug is nearly 86 years old but is still very healthy and active for his age, and has a sharp memory. However, like everyone he sometimes gets facts mixed up, and, since he was only just short of 5 years old when Grandpa was born, his memory of the event is that of a young child. Also, I have not had the chance to have Doug read my re-telling of his story here, so it is possible I may also introduce some errors. I say all of this because there may be family members (you know who you are) who will quibble with certain portions of what I am about to tell, so I simply preface this by saying it is my rendition of Doug’s story of Grandpa’s birth.

Grandpa’s birth was eventful–an event just short of a tragedy. It all started when great-grandma, still pregnant with the baby, fell down the stairs. Just hearing that can make you flinch, and Doug remembers it with the vividness of childhood trauma.

She was standing on a step-ladder at the top of the stairs, Doug said. I think he may have said she was cleaning. One can imagine it was just before the new year and the pregnant mother with a bunch of little kids under foot was trying to get the house cleaned for the new year. Or maybe with the baby coming she felt the urge to “feather her nest” before its arrival. In any case, she was big and awkward in the final days of her pregnancy. Most people wouldn’t have even tried to clean their house that close to term, much less get on a ladder. But she was in a rush, and wasn’t thinking.

She fell, Doug said, down the stairs, landing on a metal bucket full of water. Thinking about it is enough to make you recoil in horror. It is the type of story the ends with dead babies, and even dead mothers. “I saw her lying there,” Doug said, and when he spoke he had the faraway look of someone seeing a memory all over again. “There was blood.”

It is not hard to imagine the stark terror a little 4-year-old boy would feel finding his mother laying at the bottom of the stairs, contorted in pain and bleeding, her own fear of losing the child inside her painted on her face. She went into labor and was rushed to the hospital for a difficult, breach delivery. Both mother and baby survived, and a baby that could have been dead was born December 31, 1927. But all was not right with Grandpa.

“His head was crooked when he came home,” Doug said. Grandpa had Torticollis (also called Wry Neck). It was the result of the fall, Doug said. And for some ten years Grandpa was the little boy with the crooked head. Then as a boy of about 10 or 12 years he underwent surgery to correct the problem. Afterward there was a neck brace, and physical therapy. Grandpa still bears the scars from the surgery today. Long thick scars run up both sides of the back of his neck. It looks like it must have been terribly painful surgery, but if you met Grandpa on the street you would never know he had been born with Torticollis.

Doug said the year he got his neck fixed was the same year he accidentally stuck his hand in the corn chopper and lost the last joint off his pointer and index fingers. But that is a different story.

**Notes**

–Before I wrote this Grandma told me that Grandpa’s oldest sibling Anna had said that some other baby had died when their mother fell down the stairs. However, Grandma also said she heard this from Anna after she had begun exhibiting signs of dementia. Because of this, and the fact that the assertion was third hand while Doug told me his story himself and was quite clear and firm in his claim I have deferred to his account.

–There is some dispute over what was the direct cause of Grandpa’s Tortillis. Doug claims it was because of the fall and one can certainly see how he would reach that conclusion: Mother falls down stairs, baby brother comes home with crooked head. But other people have asserted other reasons. Grandma said she was told that Grandpa was involved in a breach birth (Doug did not give me that bit of information) and she thought the doctors had damaged him trying to get him out. The website I linked above for Torticollis says that:

Torticollis may be:

* Inherited: Due to faulty genes
* Acquired: Develops as a result of damage to the nervous system or muscles

If the condition occurs without a known cause, it is called idiopathic torticollis.

Torticollis may develop in childhood or adulthood. Congenital torticollis (present at birth) may occur if the fetus’ head is in the wrong position while growing in the womb, or if the muscles or blood supply to the fetus’ neck are injured.

So, the official possibilities are (a) Genetic defect (b) Wrong position while in the womb or (c) injury to the neck. Any of those is possible. A difficult breach birth, with doctors struggling to get the infant out, could certainly injure the neck. And having the mother fall down the stairs on a metal bucket could also injury the neck.

Holidays are a balancing act with Grandpa. There is always the ever-present thought that this one may be his last, and so there is the desire to have him where everyone can see and enjoy him as much as possible. You want those happy final memories. But then there is the present reality that Grandpa cannot cope with large gatherings. It is utterly overwhelming to his now crippled mind. Anything more than a slow, nearly monosyllabic, two-way, or one-way, conversation is more than his mind can grasp. A room packed with people noisily talking and laughing is unbearable.

The balancing act on Thanksgiving meant that Grandpa was very happy to see everyone arrive (he knew they were family, even if he didn’t know exactly who everyone was) but after fifteen minutes–about how long it took the majority of guest to appear–he had experienced enough. He crawled across the living room floor to poke and prod and examine a strange object in a chair (said object happening to be a very awkward grandson) only to give up in perplexity. He was then helped back to the couch, where he promptly fell asleep propped up in the warm crook between two relatives. The solution to being overwhelmed is to either shout and agitate, or else shut down and fall asleep–and he chose the latter.

Lunch followed shortly, at which point I got Grandpa to a quiet location with only a few dinner companions who knew enough to eat quietly and not distract him from the difficult task of dinner. After lunch I wheeled Grandpa back to our bedroom and shut the door. By this manner he survived. As the afternoon went on he agitated some over the loud talking that drifted through the door, the strange thumps, and the baby cries, but it was not enough to get him worked into a fit. Any relative who wished to visit quietly could come in and sit with Grandpa, but basically fifteen minutes of everybody was all he needed, or could handle.

I was pretty pleased with the success. Not only did it seem like everyone else had a good time, Grandpa appeared to have also had as good a time as he was able. Even more importantly, the excitement did not end up making a very bad time for Grandpa.

But the flush of victory did not last. Promptly following the Thanksgiving holiday, Grandpa got sick.

Grandpa caught a mild cold from me. I had suffered a very mild sore throat, and some mild congestion. Physically, Grandpa did not appear to suffer any worse–in fact, his chest congestion was nowhere near as bad as he sometimes spontaneously gets with a random fit of emphysema. Nonetheless, it turned into a string of very bad days. Grandpa is at the state in his Alzheimer’s where even a little bit of sickness, tiredness, (or both,) has a dramatic, even frightening, decrease in his mental abilities. It makes one ponder how thin a mental thread still keeps him soundly anchored.

Everything started in earnest Friday, the day after Thanksgiving. His nose was running like a faucet, and he was cranky. (Imagine a baby with a cold, and you have the general idea.) By suppertime he was pretty much slouched over sideways in his wheelchair, snot making a regular appearance at the end of his nose while he muttered vaguely dissatisfied and irritated things at the world at large (and thus not eating his supper). I commented to Grandma that tonight was going to be a bad night. I could tell Grandpa was feeling out of sorts, and when he is feeling out of sorts that often translates into a very bad night. You get a feel for these sort of things.

When I put him to bed he immediately began to fuss (a bad sign–if he is in a proper state he typically falls asleep almost instantly) but at that point I was so tired that I got undressed, climbed into my own bed, put on my ear-plugs, pillow over my head, and actually managed to fall asleep. About midnight Grandpa’s low grade muttering and fussing with his blankets escalated to the more insistent, “Ma? Hey, Ma?” at which point I woke and knew for certain we were in for a very un-wonderful night. Again, if you’ve ever had a sick baby in the middle of the night, you have a pretty good picture. Grandpa had an undefined vague state of miserableness which kept him from sleeping, and so once he got the ball of sleeplessness rolling it just snowballed from there.

At about 1:30 I decided to cut my losses. I moved Grandpa over to the overstuffed chair beside his bed where he could sit more comfortably (and hopefully fall asleep) and I left the bedroom to go lay on the couch where hopefully I could sleep, or at least rest better, in the absence of Grandpa’s insistent noise-making. But the situation continued to go downhill. By this time I had been thoroughly awakened, so it took some effort for me to fall back to sleep. Eventually I did, sleeping fitfully for maybe an hour. I woke and found that Grandpa was still agitating, and in fact his volume had increased. I went to check on him, then went and laid back down on the couch.

And Grandpa’s volume continued to increase. At this point we’ve passed 3:00 in the morning. I’m thinking, “He is going to be terrible come the day. This is going to be really bad tomorrow. I wish he would fall asleep,” as I lay there on the couch. Meanwhile, Grandpa keeps up his litany, not incessantly, but erupting at probably precisely the moment when he begins to feel tired so as to make sure he won’t fall asleep.

“Ma? Hey, Ma!”

“MA? HEY, MA!”

“MAAAAAAA! HEEEEY MAAAAAAAAAA!”

The bedroom door is shut, and I’m down the hall in the living room wearing ear-plugs and I can still hear him clear as day. For a man nearing his eighty-first birthday and growing rather frail he still certainly isn’t lacking in vocal power. I get back up and go to check on him, wishing I had some brilliant (easy) solution that would make him settle down long enough to fall asleep. It’s heading on toward 4:30 in the morning and if he has slept at all during the entire night it has probably been no more than an hour. You’d think someone sick, and that old, would have run out of energy a long time ago. Unfortunately, I’ve already learned from past experience that there is a certain preternatural energy that takes hold, almost like a drug, that only burns out after one full night.

“Grandma’s asleep,” I say grumpily to Grandpa. “What do you want?”

“Well, uh, I’m feeling nervy,” Grandpa announces, perhaps making the understatement of the night. With one word he rather brilliantly summarizes his condition.

I feel at a loss as what to do. For a moment I consider leaving the bedroom light on in the hopes it might make his “nervy” feeling go away, but I know the chance of that helping is almost nil. The nervy feeling is coming from within Grandpa, a vicious self-feeding cycle of unease that comes from sitting up in the middle of the night for hours on end. The best solution would be to sit down with him and hold him in my arms until he relaxes and falls asleep. But I am feeling too grumpy and tired. So I mumble something about going to sleep, and leave again. I think this proves that I am not a mother, who would have been kind enough (and smart enough) to sit down and do the hug and come off a little better for it.

I lay on the couch, wishing I had the ability to sleep like a rock, and sometime around 4:30 Grandpa finally falls asleep. I went back to my bed. By 8:00 Grandpa was awake for the day.

Grandpa paid for his little stunt. I’m still fairly young and can bounce back from a bad night pretty quickly. Grandpa cannot, and his all-nighters are perhaps the most self-destructive thing he does (but try explaining that). What followed was three days where Grandpa hardly ate or drank. He was like a man stupefied. He sprawled where he sat. He drooled. He stared blankly. What strength he had was spent that night, and like a druggie coming off a trip (not that I’ve seen such a thing but let’s not ruin the analogy) the next several days were nearly hellish. Not because he scribbled on the walls and chewed on the chair legs, or anything like that. It was more like the opposite. We had no repeat all-nighters–he hadn’t the strength–but during the day he was in mindless shambles. When he wasn’t a nearly comatose sack sprawled on the couch, he was shouting for people living and dead, real and imagined. And he wouldn’t eat or drink at meals. It was exhausting. Not so much physically–because there was practically nothing I could do for him–but emotionally and mentally it was very hard.

It is deeply distressing on a very fundamental level when someone in your care will not eat or drink. You feel like a failure, not matter how much you tell yourself it isn’t your fault. I wheeled him to the table and he would eat nothing. It was as if he didn’t recognize his food, or didn’t care. It was terminal apathy. I would try to feed him, or give him something to drink, and he would refuse to open his mouth or else turn his head away.

The experience sucked everything right out of me. After a session of trying to feed Grandpa and ending with him not eating and not drinking, I felt like I wanted to go back to my bedroom, shut the door, and lay on my bed staring at the ceiling, blanking every thought and feeling out. How many days could this go on? The feeling of futility and helplessness made me want to give up and walk away and yet I felt compelled to go back the next meal, to try. There was absolutely nothing I could do. I couldn’t pry his mouth open and force him to eat or drink. But to not even try was like giving up on Grandpa. So I would gently prompt him, and wallow in my own state of powerlessness and the general sense that everything was falling apart at once. It was like watching someone who had given up the will to live, and that is a very unhappy thing to see.

That Sunday was my Dad’s birthday, so it was arranged that my uncle Kevin would come down to watch Grandpa so I could be home. I came back from the party to face a tale of woe. Grandpa had eaten and drunk nearly nothing (yet again) and had been unable or unwilling to stand for his diaper changing (a problem I probably could have handled much better than Kevin). I returned to find Grandpa sleeping on the living room floor, looking terribly exhausted. I think everyone was exhausted.

Monday Grandpa was better in that he was much calmer and more mentally collected, but still he was not very interested in eating for a man who had eaten little the last two days. Late in the morning he sat on the couch, his hands clasped in his lap, his eyes closed. I don’t know where his mind was, but twice he began to sing snatches of song. The first time it was some line from a traditional Christmas song, his voice slowly picking out the words until he trailed away. The second time he suddenly began “Jesus Loves Me” in a halting faint voice, his eyes still closed.

“Jesus loves me . . . this I know . . . for the Bible tells me so . . .” The careful plodding words were endearing and made me want to laugh like one does at a little child who does not realize how cute he has been. But at the same time it was almost heart-breaking.

You can know in the abstract why you do something, and that knowledge can set your course of action. But occasionally in the day to day living it can get hard, very hard, and somehow the knowing starts to feel dry and empty. But then in the flash of some everyday moment you see something, and feel something, that reminds you why you are doing this in a way you can’t describe with words.

That Monday I had just survived through four very hard days, and I felt spent. But watching Grandpa sit there, frail and small, eyes closed and hands clasped in his lap while he slowly sang snatches of songs, I felt powerfully reminded again of why I was doing what I was doing in a way I cannot convey to you in words. The picture of Grandpa, sitting on the couch quietly singing “Jesus Loves Me” to himself, will stay with me the rest of my life.

The good news to end this story is that Grandpa bounced back. It was not the first time Grandpa had a bad jag, and so the whole time I was intellectually telling myself, “It’s happened before. Just hold steady and it will pass.” But at the same time there is a voice in that back of my mind which whispers, “Oh God, he isn’t eating or drinking. What if he doesn’t snap back? What if this is it?”

But he did bounce back. Tuesday he got up like it was any normal day and ate like he had never been sick. And Wednesday. And Thursday. And so life has continued normally.

The bad news is that if he takes such a bad turn for a minor cold, what happens if he gets more sick?

Stupid question, I know.

I guess it was Monday morning that Grandpa got out of bed with a diaper full of soupy poop. (I had stopped the laxative when he stopped eating, but it wasn’t good enough, apparently.) This was nothing out of the ordinary, except Grandpa wasn’t entirely back to his normal self, so he wasn’t accepting my usual explanations as to why he had to stand still so I could clean him up. Just as soon as I had peeled the reeking diaper off his bottom, he decided it was indecent for his pants to be down and started trying to pull his pants back up over his soiled bottom–picture Grandpa trying to pull up the front of his pants while I am trying to keep the back of his pants pulled down with one hand and wipe with the other. Trying to keep my eyes on several things at once while Grandpa lurched around the room–for some reason bound and determined to get out of there–I continued to clean at his bottom. He quickly went to his knees, and started crawling from the room and off down the hall, pants bunched around his knees. I crawled after him, wiping all the way.

Such situations are best handled by keeping your sense of humor. Grandpa was certainly being anything but helpful, but thanks to some dexterity and quick work on my part nothing beside Grandpa’s bottom ended up soiled. And rather than losing my temper as he crawled off down the hall, I simply crawled after him and amused myself by thinking how life could hardly get more surreal than crawling down the hall trying to wipe your Grandpa’s bottom.

n five minutes I had his bottom clean. I put a fresh diaper on him, got him in his wheel chair and to the kitchen table.

Life went on.