Author: Rundy

One thing Grandpa’s death has brought forcefully to my attention is the huge legal hassle that comes with dying. You’d hope (or wish) that since dying is such an unpleasant business everyone would have mercy on your survivors and expect nothing from them in this difficult time. Sadly, that is not the case. The death of a loved one can present someone with possibly the most difficult legal and financial situation they will ever face in their life. That is not something looked forward to in the best of circumstances, and can seem incredibly overwhelming in the midst of grief.

So long as we have earthly possessions this cannot be entirely avoided, but there are steps that can be taken to make the trouble after the time of death less difficult. I am sure I am not the first to tell you this, but I will repeat it: Make a will. Have mercy on your survivors, please, and make a will. If you are caring for someone else, check to see if they have a will in place. If not, see if one can be made. I am sure there are many other legal related things that can be done, which a consultation with a lawyer or other expert (or a lot of research on your own part) could make you aware of, and save other people a lot of work down the road. Some things to consider are: Whose name is on any property owned? Whose name is on stocks and bonds? Who are the beneficiaries of any insurance policies?

Grandpa had very little that was in his name alone, and he had a simple and straight-forward will in place, so dealing with the legal and financial issues after his death has been (so far) a relatively straight-forward process. The emphasis is on relatively. We still had to go through probate, and the forms for the process (like all bureaucratic forms) were not clear and easily intelligible. As something of a collective family effort we managed to get the forms filed without the involvement of a lawyer (but with some very nice help from the staff and clerk at the probate court). On the death of a loved one, most people are not up to untangling the intricacies of this process and simply hand the entire matter over to a lawyer. Having been through the process, I can sympathize.

Beyond making sure all the proper legal documents are in place before your death, or the death of a loved one in your care, it is also a very good idea to familiarize yourself with all the steps that will need to be taken in the event of the death. Who will need to be notified? What will need to be done? The list can be distressingly long, and it is easy to forget things when the upsetting event of death actually comes. Social Security, Pension, Insurance Policies . . . who else? What kind of paperwork will you need to file with these various organizations? Where is the birth certificate? Death certificate? Marriage license? Insurance policies? Financial records? If it is your death you are preparing for, make up a list of who will need to be contacted and where the needed paperwork is located and make sure the person taking care of your estate knows where that list is located. If you are preparing for the death of someone in your care, make sure you know who needs to be contacted, and where the information is located. Nobody wants to be left tearing apart the house looking for who-knows-what and who-knows-where after someone has died.

When Grandpa died one of my uncles determined all of the organizations that needed to be contacted, and did so promptly. Grandma had all the paperwork filed away, but we had to do more than enough sorting, trying to find exactly what we needed, determining what policy was the correct one, and what phone number we were supposed to call, and so on. It could have been a lot worse, but it also could have been better.

It can seem morbid to deal with this sort of thing in advance, but it isn’t. It is wise. We will all die, and we don’t know the day, so the wise will prepare in advance. Yes, it is unpleasant but those who must deal with it later will thank you. It is one good thing you can leave behind. So remember, put your house in order.

(This was originally written for the extended family. I shared it, along with some of my other writing, at the memorial we had for Grandpa.)

Grandpa is gone, and it is natural to think about what we have lost in his passing. But there is something I would like to share today, something that I think gives a needed perspective. In this time when many are feeling burdened with grief, it is good to remember what burden Grandpa felt. Grandpa was very aware of his Alzheimer’s, and that sickness was a great burden to him. He did not speak much about it, but today I will share with you some of his earliest words on the matter. It is something for you to think about, and remember.

When I first came to take care of Grandpa I wasn’t sure how much he understood why I was there, or how much he understood about his problem. Then one day shortly after I came, we went on a walk. It was sunny, and warm, a beautiful fall day. Grandpa decided he would take a walk up toward Doug’s. I guess Grandpa was feeling fairly well because we made it to the top of the hill where Grippen Road meets Glenwood before Grandpa decided to turn around.

When we turned around Grandpa seemed to collect himself and then said (without any lead-up), “I do hope and pray that this curse would be taken away.”

I said nothing at first. On other days when Grandpa had complained about his general state I commiserated about the fallen state of man and how our only hope was new bodies. At first I wasn’t certain if he was taking up that general eschatological thought in his out-of-the-blue comment. But I thought not, both because I guessed his recent blow-up at Grandma was on his mind (“Well, Pa,” she had said afterward, “You’re not very clear.” “I’m sorry I’m not clear,” he had said,) but also I felt that the way he had gathered himself before making the statement indicated he wasn’t making an off-hand comment about the condition of the world in general but something much more personal.

He said nothing more after a few steps, so I said, “It’s hard, isn’t it?”

“Yes,” he said. “It’s very hard. I think . . .” But then he stopped. Finally, he said, “I don’t know what I think.”

He spoke no more on that subject and a little later when he spoke again it was on a different subject.

The short exchange might not seem to mean much if you were not there to hear the way in which he said it, but I’ve recounted it because it meant a lot to me. I think all of us who have interacted with Grandpa could see quite clearly that he was painfully aware that he couldn’t communicate clearly, and that he made a “fool” out of himself by doing stupid things. But to be aware that you can’t speak clearly at this particular moment, or that you do stupid things, is not the same thing as expressing a larger awareness—both the larger issue of causation, (that is, “I am doing these things because I am succumbing to Alzheimer’s”,) and his spiritual relationship to his problem.

Now we can say, “I hope and pray” in a very flippant manner, but that was not the way in which Grandpa spoke. He spoke quietly, but in an earnest way that told of what was deep within him. I felt it was a rare moment where he opened up to express his recognition of his affliction and his innermost earnest desire and petition regarding his state.

I wasn’t sure he would ever speak so openly about his condition again, but about a week later we had another exchange.

On this occasion Grandpa had gone to bed for the night, but I needed to finish up on some stuff I was doing, so I didn’t go to bed at the same time. I went to check in on him a little later and he was sitting up in bed. I took care of his minor problem and was starting to put him back to bed when he paused and said, “Do you believe that?”

“What,” I said.

“What he said,” Grandpa said, gesturing toward the CD player. “Do you believe it applies to this age?”

I had left the Bible on CD playing for him (he liked to listen to it when he went to bed) and the section being read was from the gospel of Mark where Jesus speaks about faith saying, “If a man has faith he can say to the mountain ‘throw yourself into the sea’ and it will be done.”

“Yes,” I said. “I believe it.”

“Well some people say there are two ages,” he said.

“It says elsewhere in scripture, Grandpa, that all scripture was written for our instruction. So I believe it, yes.”

“But some people say, ‘Well, then, why are you sick?’” Grandpa said.

I answered, “And Jesus disciples asked him ‘why was the man was born blind–because of his sin or his parents sin?’ And Jesus told them ‘Neither, but that the glory of God might be revealed in his life.’ And we can say the same for your situation, Grandpa.”

He gave a little chuckle and said something to the effect, “I don’t understand why.”

And I said, “I know. The situation of Job is a good example. He suffered a very lot and God didn’t give him an explanation. God wouldn’t explain himself to Job—Job had to accept it because God was God. We have to believe by faith that He is a loving and compassionate God.”

“Yeah. It certainly gives you something to ponder,” Grandpa said.

Then, in alluding back to the issue of faith he said, “I sure would like to be healed from this . . . or whatever comes down the pike.”

I said, “He will, Grandpa. He will heal you . . . if not by making this body well, then by taking you out of this body.”

He gave a little chuckle and said something about hitting him over the head with a board. (Earlier when he had expressed distress about waking up so much in the night I suggested he hit himself over the head with a board to go back to sleep. I suspect he was furthering the joke on this occasion by suggesting patricide by the same method.)

I am telling you these stories to give you some idea—as much as any of us can—of what Grandpa’s thoughts were. The sickness was a burden to him, in particular the Christian (or spiritual) aspects. Not only did he wish that his sickness would be taken away, but the implications of his sickness evidently weighed on his mind. If he was not healed in answer to his prayers did that mean he didn’t have enough faith? Or was this all happening to him because of some past wickedness in his life? This last thought was something he expressed more than once.

Today we face the weight of grief, knowing that we will not see Grandpa again in this earthly life. But in facing that grief, we should remember the burden that Grandpa faced. It was his earnest desire and prayer that he would be healed, and his sickness taken away. That was his heart’s cry. And God is faithful, and He has answered that prayer. Grandpa now knows what he longed for, and the burden he carried has been lifted away. His burden is gone. Though we may be sad that he has left, I saw what burden he carried these last three years, and I know what he desired.

For his sake today, I am glad.

This is a long, rambling post. It is rambling, and with such bad structure, because there is so much to say, I can’t say it all, and I don’t know quite how to say it. But maybe, somehow, you will understand what I mean.

I meant to write a post like this some time ago, long before Grandpa’s death arrived, but it is still appropriate today.

Alzheimer’s can be a sad, and even grim, sickness. Day after day is the steady grind, and day after day is the steady decline. There is plenty of opportunity for tears, and even despair. How does a person survive?

There is much that goes into coping with Alzheimer’s, but a sense of humor doesn’t hurt. One of the great things about my experience with Grandpa was the synergy between our humor. I think many people are not fully aware of Grandpa’s sense of humor because for most of his life his powerful sense of decorum often kept his humor in check. His humor was usually not the type for mature or refined company, so as an adult it was often restrained, only occasionally bursting out.

There is a good deal of overlap between Grandpa’s humor and mine, though I think I have much less of a sense of propriety or decorum. This overlap meant that as Grandpa’s Alzheimer’s grew worse, (and his sense of humor became increasingly uninhibited,) and where mature conversation was lost, we gained the ability to tease, joke, and laugh. Grandpa never, never, lost his sense of humor.

Conveying our banter, games, and jokes, is difficult. Partly because a huge amount of nuance, texture, intonation, and inside references went into the verbal teasing and this makes it difficult to relay the full humor of an exchange in a way that accurately conveys why it was funny. And partly it is difficult to convey because as a comedian I am extemporaneous, making it up as I go along, and forgetting it just about as quickly. So, if you weren’t there, you missed it, and I forgot.

At the time I didn’t really think about why I indulged in the humor. It was just something that spontaneously welled up inside me that I let bubble out. But in reflection I see the humor did several important things. First, it was a way for me to communicate with Grandpa, to express my love and affection in a way he could understand, all the way up to the end. Second, it was a way for me to take Grandpa’s mind off his troubles and misery. Introduced at the right moment, a bit of humor could effectively defuse one of Grandpa’s worried or agitated moods. Finally, the humor was simply an expression of me finding humor in life, an act which provided a bit of antidote to the hard times, and sad times.

When I came to care for Grandpa he was already significantly impaired in his speech ability, so any verbal humor was always largely a one-sided act. It was also almost exclusively absurdist humor. The key was to keep the lines short enough, and absurd enough, that Grandpa could easily grasp that it was an absurd joke. A bonus was if I could bait him into giving one word responses. Below are a couple of examples of exchanges we would have, perhaps none of them exactly verbatim for an actual conversation, but in substance accurate.

Example 1

Me: Are you poor? (Grandpa has always thought of himself as very poor, so it is an easy answer)

Grandpa: Yes.

Me: I think we should rob a bank.

Grandpa: What?

Me: Don’t you think it would be fun to rob a bank?

Grandpa: No. (He hasn’t caught on to the joke. Otherwise he would say, “Sure, lot’s of fun.”)

Me: But it’s lots of fun. You get to shoot guns and drive cars really fast, and have the police chase you with sirens. And if you’re really lucky, you get thrown in jail.

(But this time I’ve piled on enough bad and not fun things, that Grandpa gets the joke. So I add the last twist:)

Me: But don’t worry, when they catch us, and we go on trial, I’ll testify against you and get off scott free while you go to jail for twenty years.

The last line is Grandpa’s favorite, not only because it adds a little twist to the story, but also because it reflects a view he has on life: The guilty are always getting out of their due punishment by blaming someone else.

Example 2

(I sit down next to Grandpa and give him a hug)

Me: Boy, you are so strong and handsome. How did you get so strong?

Grandpa: Don’t speak such nonsense.

Me: You’re so strong, I wish I was as strong as you. I bet all the girls like you.

Grandpa: You think so, huh?

Me: Yep. I think we need to get you a girlfriend.

Grandpa: (Silence)

Me: So what we’ll do is, we’ll take you to the beach in California and have you walk up and down the beach in a tiny bathing suit and flex your big muscles for all the girls. Doesn’t that sound like a good idea?

Grandpa: Don’t be stupid.

I did a lot of variations on the “Your Handsome” joke. Grandpa was never a big man (perhaps topping out at 140 lbs in his prime), never was a man for the girls, and certainly never wanted to prance around in any type of bathing suit. It was probably not possible to come up with a more absurdly stupid joke, and Grandpa rarely found it funny. But I enjoyed it immensely because it was a great way to tease Grandpa because he found such jokes about his person slightly embarrassing, highly stupid, and vaguely inappropriate.

I could go on and on. I had various other stock basic jokes which I would take off in infinite variations. There was the “When you were a little boy . . .” jokes usually centering around some supposed wickedness he had done as a child, or somehow involving how his mother had treated him (kisses, hugs, spankings, etc). When I came in the house and he asked who it was, I would tell him I was his conscience come back to haunt him for all the bad things he had done. Then there were the motorcycle jokes, the car jokes, and the traveling jokes, all things which Grandpa hated and all things I would suggest he engage in, in some elaborate and over-blown fashion.

Some of my verbal jokes didn’t necessarily involve Grandpa directly but were my own little personal riff on life which he may or may not have got (depending) but he certainly gathered my general mood. I took to loudly singing him “Georgie Porgie Puddin’ Pie” when I took him out to lunch or supper (don’t ask me why—it just seemed the thing to do) and as Grandpa took to calling me Gene (the name of his brother) I took to calling him Georgie. Part of the joke was the implicit messing with his mind and/or messing with reality—he would shout “Gene!” and I would shout “George!”—and part of it was just a subtle acknowledgment of the ludicrousness of our entire situation—calling people by names that weren’t theirs, shouting endlessly for people who weren’t present.

As time went on, I became increasingly convinced that, in some sense, Grandpa was on to that deeper subtext of the joke. The most clear example came about the middle of this summer, one evening when Grandma was quizzing Grandpa about the names of people in his family. One of the first things Grandpa lost to Alzheimer’s was the ability to recall faces and names together. So when Grandma asked Grandpa for the name of his mother he glowered at her (not wanting to admit he couldn’t remember) and then told her very distinctly, and defiantly, “Georgie.” His (rather brilliant, given the circumstance) verbal riposte left Grandma nearly hysterical with laughter. He couldn’t remember his mother’s name, but he could remember that Georgie was the “wrong” name that everybody kept using for the somebody and so he deliberately used it to make his own point.

On another occasion (perhaps a year or so ago) there was some company visiting. Grandpa was sitting and listening to the people converse, and I imagine he got to thinking it was the most inane blather he had ever heard, because in the middle of the conversation he burst out, “Pick your nose, pick your nose, pick your nose.” He was probably thinking that the conversation was about as interesting as watching someone pick their nose (and the thought just happened to come out of his mouth) but it certainly left an awkward silence. I was not present for that particular conversation, but it was relayed to me with a mixture of horror and amusement. I found it greatly amusing, and ever afterward I would burst out to Grandpa at odd intervals, “Pick your nose, pick your nose, pick your nose! Don’t forget to pick your nose!” (or some other variation on the fine benefits of nose picking). In the months afterward I doubt Grandpa remember his initial statement which had sparked my reoccurring admonition, but my admonition could often get a chuckle out of him.

I could never be entirely certain how well Grandpa was following the humor. One day, sometime during this summer, Grandpa was hollering at the top of his lungs, for nothing in particular. I was sitting next to him, trying to keep him company while I flipped through a magazine. He would shout “Hey!” with ever increasing volume, staring across the room as if something over there should answer. I would say, “Yep,” or “I’m right here,” or “I hear you,” in response. Either my responses simply weren’t registering in his mind, or he was truly trying to get the attention of the (non-existent) person on the other side of the room, because his volume kept increasing. Finally, after a bellowed “HEEEYYYY!” I drolled out, “A little louder, Grandpa. The Chinese can’t quite hear you yet.”

There was silence. Then Grandpa said, “Was that a snide comment?”

I had to laugh then.

The best times were when Grandpa got my jokes, and then tried to take them one step further. It didn’t matter if his Alzheimer’s stopped him—the effort was all that counted. On another occasion, some time ago, he was calling out randomly. He shouted, “Gene!” so I shouted “George!” So he shouted, “George!” so I shouted “Where are you?” so he shouted “Where are you?” so I decided to have a little more fun and shouted “Give me all your money!” Grandpa started to repeat me—but then caught himself—in that instant the Alzheimer’s parting for just a moment so that he realized what we were doing. “You want it all, huh?” he said, mischievously. “Well, hold out your hand, palm up, and I’ll put a little—” but then the Alzheimer’s struck again, and his words left him. I couldn’t decide if he had been attempting to say he would put something naughty in my hand or that “all his money” was a pittance, but I laughed for his attempt to best me, and Grandpa laughed too.

Perhaps we had the most fun with our physical humor. I had a running gag where when Grandpa called (for me, somebody, anybody, to do something, anything, not sure what) I would come to him and offer him a pinch, a poke, or a bite. Sometimes, I would even tell them they were on a special sale. Firstly, this would distract him from whatever imagined problem he had, and secondly, it almost always got a good reaction from him. And there was a good chance that if I give him pinches that it would devolve into a “pinching fight” where we would both try to pinch the other while chuckling with mock malevolence.

I constantly “harassed” Grandpa physically, playfully, partly because with him constantly calling me over it got boring to come and simply ask him what he wanted (especially when he couldn’t come up with any answer) so it became more fun to come over and harass him whenever he called. And it served the purpose Grandpa really wanted, which was for somebody to come and pay attention to him, and remind him that he was loved. Of course, not to be entirely outdone, Grandpa wasn’t aloof to sneaking his hand out, thumb sticking up threateningly from the cushion beside him when I began to sit down. He never quite dared let me sit on his thumb, but it was his way of saying, “I gotcha back.”

As Grandpa’s Alzheimer’s grew increasingly worse he became increasingly less aware of his surroundings and in this condition I found the great opportunity to “get” Grandpa. For someone else, I’m sure the game would have been cruel. It consisted in me coming upon Grandpa when he was completely absorbed in his task (often picking lint from the carpet) and leaping on him, snarling and biting like some ferocious lion descending on its prey. Without fail, he would jump out of his skin with a shout. I would then fall down beside him, laughing and crowing, “I got you! I got you! I got you!” And Grandpa would laugh, and say, “Yeah, you sure did. You sure got me that time!” And sometimes he would vow that one day he would get me back.

One of my most favorite times was when I snuck up on Grandpa, commando style, slithering around the couch so I could pop up and take a bite out of his knee. He jumped—oh, he really jumped! Afterward, in the midst of his laughter, he said, “Did you see me? Did you see how I jumped? It’s a good thing I didn’t have my mini-club then or I would have splattered you all over the place.”

Yes, indeed, Grandpa knew how to appreciate the fine art of getting someone.

My most favorite time, was the time he got me back. It was a bad evening for him. He spent I don’t know how long down on his hands and knees, shouting incomprehensibly. Finally exhaustion overcame him and when I came out to check on him he was sprawled on the carpet like a dead man. He looked so sad, weary, and worn out as I bent down to check on his sleeping form—and at that moment Grandpa went “Bwhahahahaha!” and came up, grabbing for me. Oh, yes, I jumped. It was completely unexpected.

“I got you! I got you!” Grandpa said, chuckling gleefully. And I was so proud of him.

I treasure all of those times. They are memories that can still make me laugh, even now, two short weeks after Grandpa is dead. I treasure them, because even in the midst of Alzheimer’s—even in spite of it—those times were times when we had fun together in our own personal, crazy, zany, way. It was the way we spoke the language of love.

This last story I will tell is not exactly a joke, but it seems a fitting conclusion. Every night when I put Grandpa to bed I would tuck him in and give him a goodnight kiss. But I got bored with that. So when I tucked him in I started giving him “hundreds” of kisses all over his cheek. I was teasing him, a little, but then one night after I did it he looked up seriously and said, “Just one kiss, now. Any more than that, and it’s a little queer.”

If you say so, Grandpa. Just one kiss.

We all grieve in different ways. Some people grieve loudly, others in silence. Some people take a long time to grieve, other people finish grieving in a short time. Grandma told me she was grieving long before Grandpa actually died, and I think that is true for me also. But that doesn’t mean I finished every last bit of grieving before he died.

If grieving entails the acknowledgment of loss, sometimes absence speaks louder than words. For three years Grandpa was my life. My every waking and sleeping moment practically centered around him. What he needed, what he wanted, what his problems were, and what the solutions might be, were constantly on my mind. And if my life centered around Grandpa, the center of his life was the couch.

The couch was home base. The couch was the place where Grandpa always returned. It was the center of his domain. In the household, Grandpa was the constant fixture on the couch.

Grandpa liked the couch. It was a good couch, with good comfortable cushions. It was the place he was most comfortable. From there he could peer out the window, watch TV (back in the day when it meant something to him), and in general keep tabs on what was going on in the house as much as possible. On the couch Grandpa was there for you, always waiting. Sitting on the couch, sleeping on the couch—Grandpa and the couch were meant to be together.

So, it is no surprise that I find the emptiness of the couch the most acute reminder of Grandpa’s absence. Its silence, and emptiness, is the loudest statement of the finality of his departure. The impulse of expecting him to be there was especially strong in the first days after his death. Before, for a man failing from Alzheimer’s he could be remarkably sensitive to what was going on in the house. If a door opened or slammed, he wanted to know who it was. If someone was making noise in the kitchen, he wanted to know what was going on. If someone passed by in the corner of his vision, or went down the stairs behind him, he wanted to know what they were doing. Grandpa wanted to be informed, and he didn’t want to be forgotten. Often during certain times of the day he would shout and call for somebody (sometimes nobody in particular was named, sometimes the name would change with each shout) and often all he really wanted was somebody to come sit with him on the couch. And so, often I would come and sit with him for a short while on the couch before I went back to whatever I was doing.

It’s strange how habits become ingrained in your mind. In the first days after Grandpa’s death I so much expected him on the couch that when I entered the living room it was almost as if I saw him from the corner of my eye—my mind so much anticipating his presence—that it was only when I turned to look that my mind registered he wasn’t there. When I came in from the outside, or shut a door, words would come to the tip of my lips, ready to answer Grandpa’s shout from the couch. I would move about the house, and find in the back of my mind I was thinking about how what I was doing would reach Grandpa on the couch.

But the couch is empty now, and nobody asks who is coming in the house, or what I am doing. The constant calling and questioning voice is gone, and the empty couch is a symbol of the hole in my life. It is a symbol for that which reaches much further in my life, because the couch is not the only place I notice his absence. For three years my life and Grandpa’s life became so intertwined it was as if we had become conjoined. He always wanted me, and I was always thinking about him. When grocery shopping, I would always have an eye out for anything I thought Grandpa might like to eat—especially some dessert. Now I go shopping and there is that brief flash of regretful remembrance when I stop at the baked goods isle and think, “Grandpa would like that,” to then in that instant know that I won’t be buying any more things for him.

Then there are the memories of the funny things, the irritating things, and the hard things. There are the memories of how he would almost always wake up early in the morning to get out of bed, of how he would be determined to leave the bedroom (usually to just end up sitting on the couch) even if he couldn’t figure out how to open the door, had to push a chair in front of him to walk, or had to crawl. There are all the memories of the morning coffee, and the daily routine, the little ways in which we both knew how things were supposed to go, and other people didn’t, and didn’t know why I could do it so much better. There are the hard memories of the many bathroom disasters, and the bad nights, the irritating times when Grandpa would not stop calling no matter what. Then there are the good memories, the memories of how he liked my hugs, of how we would horse around, and how he would put up with my teasing.

Time is a double-edged sword. As the passage of time dullness the freshness of loss and hurt, so also time takes the freshness of what we had. Already the expectation of Grandpa on the couch is fading, already what was is slipping into the past. I knew long before Grandpa died that he would be leaving soon, and I knew when I gave him my squeezing hug that soon I wouldn’t be able any more. So I hugged him, but not too tightly, because I knew that all things in this world must come to and end. Now it has, and I try to not hold too tightly to the past, in some futile attempt to deny the reality of life. But I do see the empty couch, know what it means, and I grieve very quietly.

On September 24th, 2006–three years ago to this very day–I began caring for Grandpa in his final journey through Alzheimer’s. Shortly after that, I wrote a piece titled “The Next Great Adventure” (the original version on this website can be found here). That adventure has come to an end as suddenly as it began. I could write something about how this new next great adventure is beginning. Maybe I will, later. For today I am reposting the beginning of this last adventure, for reflection.

***

Life can change suddenly. Sometimes, it does. On September 24th mine did.

My grandfather has Alzheimer’s. Grandpa P was only officially diagnosed within the past year, but certainly has been suffering with the early effects of the disease for much longer. Within the past year or so the disease has finally advanced to the point that it had a noticeable effect on his daily life, and then it reached the official diagnosis.

Once Grandpa’s condition became clear we were forced to consider what plans we should make for the future. Grandpa was becoming increasingly unable to take care of himself, and Grandma wouldn’t be able to take care of him indefinitely. They would eventually–sooner or later–need help. We talked about what we would do at that time and came to the agreement that when Grandma and Grandpa needed more help I was the one best suited to move in with them and provide the additional help they needed.

But we didn’t know how soon Grandma would need help. In a month? Two months? Six months? Or a year?

And that is where the suddenly comes into this story.

I think Grandma wanted to be able to take care of Grandpa until she was physically incapable–that is, until someone was needed to physically help Grandpa around and perform other labors that she physically couldn’t do. But sometimes we can’t do everything we would like, and by the middle of September Grandma realized she was mentally exhausted and couldn’t take care of Grandpa alone anymore.

Arlan has been living with Grandma and Grandpa P ever since he went to college. He has provided them with general assistance, but while in college–and now that he is out of college and employed–he couldn’t (and can’t) provide the full time assistance that Grandma needed. So on Sunday September 24th he came home with the message, “Grandma needs you now.”

So I packed my clothes and computer (the things I use on a daily basis) and left with Arlan that night.

Such is the beginning of the next great adventure.

It has been several weeks now and I am beginning to settle in. It will be several months, I think, before I am truly settled in, but at least by this point I have learned the basic necessities of daily life so that every moment is no longer a “new experience” where I must figure out how to deal with it. I now know how to use the electric can opener (trickier than I expected) and the dishwasher (I still think cleaning dishes by hand gets the dishes cleaner, and I would argue it is faster).

In this change my situation has been turned on its head. Before I lived with all my brothers and sisters in a large rural family. Now I’m living with two grandparents, one brother, and a cousin on the edge of a city. Before dinner required ten pounds of potatoes. Now dinner requires maybe two pounds of potatoes. Before the nearest small town store was ten minutes away, the nearest chain grocery store was twenty minutes away, and downtown thirty or so minutes away. Now the nearest chain grocery store might be three minutes away, and downtown ten minutes, or less.

Life has also changed in many more subtle ways, but the most mundane are often the ones that strike most forcefully. In the beginning I always thought the amount of food I was preparing for supper wasn’t enough. There was too little meat. There was too little potatoes. Then, much to my surprise, such a small amount was actually more than plenty. But of course. I eat one piece of chicken. Everyone else in this house eats only one piece of chicken. That means we only need five, not fifteen. I needed to keep doing the math to reassure myself that the meals were not about to come up woefully short.

There is the struggle of adjusting my thinking to the new environment, but there is also the struggle of adjusting the environment to me. Neither of these adjustments has been made completely yet. In matters of adjusting my environment, both me and the people around me must give a little. Growing up in a large family, I was accustomed to structure. Grandma and Grandpa, by contrast, were used to a much less structured environment. So I have added, and intend to add even more, structure to life at Grandma and Grandpa’s while at the same time I have accepted that there won’t be as much structure as I am accustomed to back home.

In my own personal life I am still seeking my own new balance. I am a person who normally lives on a schedule. Certain things happened certain days, and certain things at certain times in each day. This type of structure in my life keeps me focused so that I don’t feel as if I am floundering around, lost, and with no idea of where I am going or what I am trying to accomplish each day. It also kept me accountable to myself because if I had a schedule I knew when I was supposed to be doing what, and if I wasn’t doing it. I lost my old daily schedule when my life changed and I’m still trying to get my new schedule together. I have a general schedule thrown together, but it takes time to figure out exactly how much time should be spent on each task required during the day, and when it is most efficient to do each job. I’m not there yet. While I wish I were, I realize that by any reasonable measure I am doing well enough.

But what, one might ask, do I think of all this change?

I consider it a great honor to be able to help people when they are in need, and particularly in great need. So I am glad to have this opportunity to help my grandparents. But mixed with this is something else, another feeling that springs from the knowledge of why my help is needed. One could say the mortal pall hangs over all of this life, but it stands with particularly visibility in my present situation. Alzheimer’s at the end is a fatal disease and though it won’t kill Grandpa today or tomorrow there is a very real way in which I feel called to a very long death watch. It’s not something thought about in every moment of every day, but it is a reality that informs everything. It’s not something that we really talk about, but we all know–even Grandpa–that I have come because he is growing increasingly unable to take care of himself. I have come to help him, yes, but then another voice echoes in the silence that I have come to watch him slowly die, his dignity and his mind stripped from him by inches, day by day. Grandpa knows it. I know it. We all know it. It is like that monster that lives in the house with us, which nobody wants to talk about, but sometimes we do, a little.

At 5:00 AM on Friday, September 11th, Grandpa slipped away. He lingered a week after he took his final turn. A week where he did not eat, and drank only a few drops. He passed quietly.

Thank you all for your kind comments.

The family took it as well as could be hoped. We all had time to prepare ourselves, which I think helped in some respects. Pat, in a comment on the previous post, asked how my Grandmother is doing, and I can say for the present she is doing good. At present her worst problem is fretting over the financial events unleashed by the death. She hasn’t slept well for most nights, and basically can’t think at all. I have taken the lead in guiding her through both the paperwork, and the more mundane activities of preparing for visitors. Since she knows she can entrust everything to me it makes life bearable for her.

And how am I feeling? I’m not sure. A bit sad, a bit numb, a bit tired, a bit relieved, and very much like a great burden has been removed. I will write more later, but I just wanted to drop in briefly to say thanks and let everyone know that it was over.

Below, I’ve attached a slightly abbreviated version of obituary that ran in the newspaper:

***

On September 11th, 2009 Ivan D. Purdy Sr., lifetime resident of Vestal, departed to his eternal rest. Born Dec. 31st 1927, he lived a full life, a quiet and humble man. He is survived by his wife of 60 years, Janice Purdy, and their children. Ivan was a World War II veteran, and retiree from IBM. He has left us as a faithful husband, loving father of six children, twenty-five grandchildren, and five great-grandchildren. Today our comfort is that he is loved, and he loved. The family would like to thank his grandson, Rundy, for his faithful and loving care for Ivan in his last years. Funeral services will be private.

***

(I didn’t edit this for quality of writing. Maybe some other day)

There were a lot of things I wanted to write before this, but life never goes in the neat little order we desire. I wanted to write about how Grandpa and I would laugh together, the foolish games we would play, and how I would tease him. I wanted to write about the laughter and lightness we made in the midst of the darkness. I wanted to write about the long goodbye. I wanted to write more about the struggle of feeding him, and caring for him, when it was growing increasingly impossible to do either. But that long goodbye has slipped by, and if I have failed to write about the things I have done, at least I have done them. I can write about them another time.

Today I will write about saying goodbye. Yes, Grandpa has only a few more days left. If I said he was dying that would be true, but not very precise. He has been dying for a long time. More precisely, he is nearly dead. It may be a few hours, or at most a few days. His mind has given up, and all that remains is for his body to catch up.

This may seem sudden, but it wasn’t, not really. One thing I have not written about much is Grandpa’s increasing failure to eat. I always meant to write more about it “sometime” but I never made time for that sometime because it was the most painful thing to write about. The struggle to get Grandpa to eat enough has been going on for more than a year, and it is a struggle I have been slowly losing. I knew this would happen from the very day I started caring for Grandpa, but the knowing didn’t make it feel any less like torture as he slipped–inch by inch–down that path. While it often felt like he couldn’t possibly eat worse than he had the day before, his eating began to grow precipitously worse over the course of the summer. If at the beginning of the summer I had to patiently work with Grandpa to get him to eat three meals a day, by the end of the summer he was only eating one meal–and that only if I fed it to him myself. The course of events was pretty obvious. I concluded that he would not last through the winter.

Grandpa was becoming too tired to live. I could feed him breakfast, but beyond that point his mind was too exhausted to eat. He didn’t want to eat, he didn’t want to be fed. He just wanted to close his eyes and rest. The fight to throw off the web of confusion was becoming too much, and Grandpa was ready to give up.

Then he did. At the end of August I caught a mild cold, and I passed it on to Grandpa. Grandpa became a little sick, and the cold made him more tired. His body recovered from the cold, but his mind decided it had finished the fight. He slept, and didn’t want to wake up. He woke up for increasingly brief periods of time, increasingly unwilling to eat or drink, and slipped into a semi-comatose state. Perhaps his last most coherent words were, “I don’t want it! I don’t want it! I don’t want it!” when I tried to feed him some chocolate pudding. What did he want to do? He wanted to sleep, to rest quietly, and to not be troubled with the troubles of life anymore.

I knew it would come to this, but that knowledge doesn’t make it easy. One of the special cruelties of this is that Grandpa has such a healthy body that if his mind had not been afflicted with Alzheimer’s he might have lived to be a very old man. So, even though his mind has shut down so that he does not interact with the world, and does not remember how to eat or drink, his body still continues on. The last time he really ate or drank anything of substance was on Friday the 4th of September, and we are now to Wednesday the 9th. Over the course of the succeeding days I have managed to coax a few dribbles of liquid down his throat–first with a spoon, then an eye-dropper–but still his body keeps going. He breathes regularly, quietly, his eyes closed, his body slowly consuming itself in a determined effort to keep going. One could call it a coma, but sometimes, for a brief moment, he opens his eyes a bit, and if you are lucky he will drag them into focus to look in that instant at the world, before letting his eyes drift back shut. He is still conscious of sounds, he recognizes voices, and he even smiled when someone laughed in his hearing. But the world is too much for him now, so he mostly just lays there, waiting for it to end.

The most painful thing for me is that he can still feel pain and discomfort. If we have him propped up carefully with pillows supporting various parts of his body he appears to be mostly comfortable. But whenever we have to move him to change his diaper his frail body–and especially his lifelong problem with back pain–flares up and he spasms and whimpers in pain whenever he is changed. I feel like we are putting him on the torture rack whenever we must do that. And then I wonder if he is thirsty. He doesn’t look uncomfortable when he is just laying there, breathing, but I can’t help thinking about how it might feel to be laying there, no longer able to communicate, slowly starving and thirsting to death. What if his throat was parched and he wanted a drink and was laying there, silent, wishing someone would give him a drink? So I give him some water with the eyedropper and he chokes because he can only swallow by reflex now and when he chokes he feels like he is drowning and the expression on his face makes me sorry I gave him something to drink.

Oh, cruel, cruel world.

What does all of this have to do with saying goodbye? It is when you have the few days when someone is clearly dying, but not yet dead, that you have time to ponder what it means to say goodbye, and how exactly do you do it. You sit there and you stare at the sleeping face, and you wonder what you could do, what you should do. Somehow, however true “I love you” and “Goodbye” might be, they somehow don’t feel like enough. How can you distill a life down to a few words?

But as I sat there, I realized that you don’t. You don’t do anything different. What you say is only as good as what you do. All your life you are saying “Hello” and “Goodbye” in what you do. The substance of your deeds toward each person is what defines whether you have given them a good “Hello” and “Goodbye.” If your deeds toward others are deeds that say “I love you” then no better “Hello” or “Goodbye” can be said. Do you want a life of no regrets, a “Goodbye” that says what you want to say? Then make sure what you do toward others says “I love you” and then whether today it is for “hello” or “goodbye” it will be the best you could give.

I have said goodbye to Grandpa. I said those words, because it seemed like to not say them was some attempt to deny the reality. But mostly I realized that my best goodbye would be to do what I had been doing for the last three years–saying “I love you” all day, every day, by what I did for him. There could be no better, or fully said, goodbye.

So goodbye Grandpa. I love you. But you already knew that.

Where we last left off in Grandpa’s bathing saga I was picking him up and putting him in the shower on the shower chair and lifting him off, cleaning and dressing him entirely myself. Deanna commented on that post that, “I am 13 years younger than my husband but not physically strong enough to do the things you are doing” That is very true. And sometimes just because you can do something doesn’t mean it is the best way. If somebody needs as much help as I was giving Grandpa, it is time to start seriously considering switching to sponge bathing.

I continued to pick Grandpa up and put him in the shower for a number of weeks. But the change in procedure had made me sensitive to Grandpa’s reactions, and–while that method was far better than how things had been going before–I was sensing we still needed to alter things more. Once I understood it was greatly distressing for Grandpa if he had to do anything or even deal with any great or sudden sensory input, I began to see more ways in which the situation could be improved.

Several problems stood out to me in particular:

–There was the constant problem of my hands not being the right temperature. After I got him undressed and moved to pick him up there was the almost constant reaction of “AAARRRGH! Your hands are cold!”

–Getting picked up unsettled Grandpa. He trusted me–but just barely. There was always the muted, “Hey, watch it. What are we doing . . .” whenever I picked him up to put him in the shower.

–Then the seat of the shower chair was always cold. Even more, he was never able to anticipate what was about to happen, so from his perspective he was being whisked through the air to suddenly and unexpectedly have his bare bottom come in contact with a cold and wet seat. This would garner another “Aaaaah!”

–And the water temperature of the shower was never exactly perfect for Grandpa. It was almost always just a little too hot, or too cold. So immediately after placing him on the cold chair I would adjust the shower head so that the water was coming down on him and then–from his perspective–he would be unexpectedly deluged with too warm water. Thus another “AAARGH! What are you doing?”

For me this was much easier than how things had been before–because now instead of laboriously trying to explain and coach Grandpa through the process (and failing) I could now simply do it. But in spite of this I realized the improvement was not enough. Grandpa–with what rationality he had left–recognized that I was trying to help him. However, emotionally it felt like I was torturing him. The workability of our situation was, therefore, still dependent on Grandpa’s mental capabilities, and with an Alzheimer’s patient working against emotions is a method doomed to eventual failure. It would only be a matter of time before Grandpa would throw a fit over being alternately (in his mind) frozen and boiled.

I realized I needed to cut down on the stimuli even more. The transfer to the bathroom from Grandpa’s normal domain got him confused, and set the ground for further agitation. The roar of the shower running further befuddled him. And being picked up naked and whisked into the shower put him right on edge.

If I had been smart, I would have then realized it was really time to start doing a sponge bath. The problem is that I am cheap, and to do a sponge bath properly you have to buy no-rinse soaps. You can’t buy them at your local grocery store–you have to order them special, and they are more expensive than regular soap. So instead of being smart and going directly to sponge bathing I tried to go to an intermediate step where I still used regular soap and rinsed more liberally. You can say I went to bucket bathing.

I found myself a huge shallow container which I could set the shower chair in. This way I could have Grandpa seated on the shower chair and pour water over Grandpa without getting it all over the floor. It was a very ingenious setup. On bath day, after Grandpa finished his breakfast, I would slide the plastic container (it was actually a deep plastic lid) under his wheelchair and then have him stand up. At that point I would remove the wheelchair and place the shower chair under him instead. To avoid the problem with the cold shower chair, I laid towels over the chair (they could easily be washed). I would then pull down Grandpa’s pants and have him sit down on the shower chair. Then I finished getting him undressed. Since I never had to pick him up, that source of agitation was removed. Since his bare skin only touched fabric (clothes, or the towels over the shower chair) he never had the discomforting cold stimuli. And since I had a bowl of nice warm water which I scooped from to bathe him, there was no roar of the shower to confuse him.

It was an improvement. Nonetheless, I soon discovered it could be better. Having water poured over him was better for Grandpa than being tossed in the shower, but even that was discomforting. Imagine if you were sitting there and minding your own business and somebody suddenly dumped water over you. It wouldn’t matter if the water was just the right temperature. It would still be at least slightly disagreeable. Further, I was still getting Grandpa completely naked, and subconsciously he really didn’t like that and it got him wound up. It would be even better, I realized, if I could clean him without pouring water over him (to rinse off the soap) and if I didn’t have to have him completely naked.

In other words, give him a sponge bath.

Don’t be dumb like me. If someone is to the point where they need somebody else to bathe them–get them into the shower/tub and clean them–then it is time to switch to sponge bathing. If you’re to the point of giving that much assistance everyone involved will find it much easier. Tons easier. And the small expense of no-rinse soap is well worth it. Don’t be that cheap.

I got ConvaTec’s Aloe Vesta Body Wash & Shampoo. I am sure there are many more which are equally good. Whatever brand you get, I would make sure it has Aloe in it, because I think it is an excellent moisturizer. The Aloe Vesta I use leaves Grandpa’s skin feeling smooth and smelling really nice.

I actually give him a “washcloth bath” rather than a sponge bath. I mix a small amount of the shampoo in with 6 cups of water (the exact amount of shampoo may vary with brand) and then soak the washcloth to the point where it is very wet without dripping water all over the place. I still give him his bath right after breakfast on bath day, but I no longer make him get out of his wheel chair. Leaving him fully clothed, I first wash his head and face. Then I dry his head and face off. Then I wash his upper body, dry it, apply lotion, and put on his clean undershirt, shirt, etc. Then I pull up his pant legs and wash as much of his legs as I can, dry, and apply lotion. Since Grandpa is still currently able to stand, for the last step I have him stand up and grab the table to steady himself while I take off his pants and diaper, wash his bottom and manly parts, dry him, and put on a fresh diaper and pants.

I wish Alzheimer’s’s caregivers could be taught these things in advance. I wish they could have seen the “before” of how I used to do it in the shower and the “after” when I simply gave him a “sponge” bath. Before it was agitation for Grandpa, and stress for me. Before it was hard work, and near disasters for both of us. Now Grandpa is calm, and it may even be relaxing for him. My stress level over bathing has gone way down, and it is a lot less work.

The key is removing all of the upsetting stimuli.

The Struggle

Everybody knows Alzheimer’s is about forgetting. But only some people realize that Alzheimer’s is also about learning. It seems contradictory: Isn’t forgetting the opposite of learning? But it is true. There are two ways you can look at it. On the one hand, for the care giver Alzheimer’s is about learning–learning how to take care of the person with Alzheimer’s. On the other hand, for the person with Alzheimer’s is about learning how to deal with forgetting. How difficult the trip of Alzheimer’s is depends a lot on how well both the caregiver, and the suffer, learn to deal with the forgetting.

For the person with Alzheimer’s the learning how to deal with forgetting begins long before any outsider is aware of it. There are subtle–perhaps even unconscious at first–habits developed to cope with the first signs of forgetting. Then it grows worse, and becomes obvious–the Alzheimer’s victim stops old habits or changing his daily routine because something he used to do he can no longer remember to do. It is easily for the observer to simply think the person “forgot” and no longer remember that they used to do the particular activity. But in my experience caring for Grandpa how to do something is forgotten long before the memory that it was done is lost. The person who is learning well how to deal with their Alzheimer’s stops an activity because they realize they cannot do it. The person who is not learning how to deal with their Alzheimer’s as well will keep trying and trying–and always ending up in a disaster.

It is hard to learn how to deal with Alzheimer’s. It is hard for the care giver. But I have always found–in my times of frustration–that it is good to remember that learning how to deal with Alzheimer’s is even harder for the victim. I, at least, still have all of my mental facilities. Grandpa is in the un-enviable situation of trying to use his increasingly broken mental facilities to figure out how to deal with his broken mental facilities. Getting through everyday life is mentally exhausting. He looks it, too, when I put him to bed. He lays there, limp, sometimes nearly asleep as soon as his head hits the pillow. It is another day survived. Another day in the battle of learning how to forget.

Early on, Grandpa was more articulate in his attempts to “learn” how to deal with his forgetting. When he first began to have trouble making it to the bathroom during the night he let it be known that he need a “can” beside his bed so that he could use it when he couldn’t reach the bathroom. That was Grandpa thinking about the problem as best he could, and trying to come up with a solution. The problem with the solution was that in his muddle in the middle of the night making sense of the “can” or “commode” was generally no more successful that reaching the bathroom. Another solution Grandpa came up with was to stop drinking as much as possible, because, as he said, “It just goes right through me and I piss it out.” There was a certain logic to the solution, but of course it would have been dangerous to his health if he had been able to follow through with his vows. However, his natural thirst and great love for coffee meant his determination to solve his bathroom problems this way never lasted very long.

Other learning I had to help Grandpa through. It was a joint effort–I saw the direction things needed to go, and I had to coach Grandpa, and he had to accept my lead. This is where care giving often hits its worst straights. The care giver–in full control of their senses–realizes where things need to go and simply tries to impose the new reality on the patient. Friction (to put it mildly) is the result. The ideal solution is for the care giver to coach the patient (both verbally and physically) down the desired path, taking it slowly as the patient slowly learns the new routine. A patient that is more willing (or able) to learn to deal with their own forgetting will make this process much, much easier.

One example of this was Grandpa’s dentures. His nightly routine was to take out his teeth and wash them before putting them in water to soak for the night. As Grandpa’s condition deteriorated this routine would more and more often end up way off track and getting Grandpa to bed was becoming an increasing project. I realized that it was time to cut Grandpa cleaning his teeth out of the schedule, but Grandpa was very concerned about his teeth–he was always afraid someone might break them so he wasn’t willing to simply suddenly give up the care of his dentures. So I started by simply helping him at the sink. It was a natural place to start. Eventually I segued to bringing him to the bedroom without doing the teeth routine. At this point his memory was failing enough that he often forgot, until he was in bed, that he needed to do anything. Once he was in bed and realized he needed to take care of his teeth, I would say, “You just wait here. I’ll bring you the jar.” Then I would bring the container to him, and he would put his teeth in. This made him feel secure that they weren’t going to get “lost” or “broken.” Then I would promise to wash them for him, and we thus avoided a long drawn out “disaster” with Grandpa at the sink. We are now at the point where Grandpa trusts me with his teeth. When I set him down on his bed for the night I simply hold out my hand and say, “Teeth” and he spits them out for me. At least, when he remembers how to spit them out. Sometimes I have to go fishing for him. The point is, Grandpa didn’t simply “forget” how to take care of his teeth. It was a process of forgetting, but also of learning how to let someone else do it. We can become so fixated on the fact that the Alzheimer’s victim is “forgetting” that we fail to help them through the steps of learning how to deal with that forgetting.

Sometimes the learning is not precisely acceptance, but just resignation. You will hear stories (or perhaps have experienced yourself) the nightmare of trying to deal with the bathing or toilet needs of an Alzheimer’s victim who is absolutely recalcitrant. Sometimes this is the result of a care giver who is not sensitive to how the situation needs to be handled, but other times the Alzheimer’s patient can be completely incapable, but also completely unwilling to learn to deal with that new reality. They simply angrily, and sometimes violently, cling to the past.

In this case I have been very blessed. While Grandpa was (and as much as he can, still is) very modest, his resignation to his inability to bath himself and use the toilet has been, all things consider, fairly smooth. We have progressed in steps through me helping him with his bathing, and his toilet needs. He has never liked this, but has gone along without too much complaint. It’s not just that he has “forgotten” how it used to be–it is that some part of him has come to realize this is how it has to be. Sometimes he still complains that it “isn’t right” that he wets himself, or poops himself, but most of the time he just lets me clean him up and we both take it as the way it has to be.

The great struggle now is Grandpa learning how to deal with the fact that he cannot feed himself. Of all the things he has had to learn, this is perhaps the hardest, and there is little I can do to help except be there to help. With all of his being Grandpa wants to feed himself, but the cold facts of reality is that he is growing increasingly incapable. It is coming to the point where either I feed him, or he doesn’t eat.

It is painful to watch him struggle with this. It is painful to watch him struggle to figure out what contortions he might go through to get the spoon in his mouth. And it is painful to watch him fail in growing frustration and desperation as every spoonful fails to make it to his mouth–or reaches there empty. He curses and pounds at the table because he can no longer feed himself but he hasn’t yet learn to accept this forgetting. But we are getting there, more and more. He let’s me feed him more often, and more instinctively opens his mouth when I lift up the spoon and say, “Here, have a bite.” But it is hard to learn that you have forgotten everything.

The Little Things

And then, in the midst of all of the forgetting, and learning to forget, sometimes little things, new things, are simply learned. They are unimportant things, but they are reminders that Grandpa is still interacting with the world. One example is Life Cereal. Grandpa prefers his cereal sweetened, but doesn’t like the super-sweet cereals like Co-Co Puffs, or whatever. This meant that before I came his selection of cold cereal was basically bran flakes, corn flakes, cheerios, or Rice Crispies–all sprinkled with sugar. However, I realized that he got rather tired of his own selection (and also became unable to eat brain flakes) so I introduced him to Life Cereal. It is somewhat sweet, which meant I didn’t need to add any sugar, and was about the right consistency for Grandpa to eat. But offering him the cereal was a bit of a trick. Conversation went something like this:

Me: “Grandpa, would you like to try a new kind of cereal?”

Grandpa: “What is that?”

Me: “Life Cereal”

Grandpa: [blank look]

To someone with a failing memory the name “Life Cereal” is incomprehensible. Asking them if they would like some “Life Cereal” is like asking them if they’d like some “Warm Black” to eat. The juxtaposition of words has no meaning. I avoided this problem by simply giving it to him to try, and calling it the “other cereal” or “the square stuff.” Given Grandpa’s failing mind I doubted the new cereal would even stick in his mind, but he surprised me. I continued to give it to him intermittently, and then one night when I asked him what he would like for his bed night snack he said, “Oh, let’s have some of that Life Cereal.” Since I used that title with him rarely (if more than once or twice) this meant that (a) First Grandpa had read the title of the cereal on the box (b) recognized that he was eating that cereal (c) recalled it at a later date. Learning a new type of cereal is a pretty good feat for someone who is forgetting how to walk and talk.

Another small example is Grandpa learning to tuck his elbows in when I take his wheelchair through a doorway. When I first started taking Grandpa around the house in the wheelchair he would leave his arms jutting out over the side. If I was paying attention I would remember to tuck his arms in when we went through a doorway, but I forgot often enough that Grandpa would bang his elbows on the door frame. After several bangings I noticed that when we started wheeling down the hall toward the bedroom Grandpa would quickly tuck his elbows in. He had learned that if he left them out they would get banged. Of course he doesn’t always remember, but it is something he learned.

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.