Why I Am Here

[Note: Grandma asked me to say something at the memorial we held for Grandpa a few weeks ago. Below is what I presented.]

Here is a trustworthy saying that deserves full acceptance: Christ Jesus came into the world to save sinners—of whom I am the worst. But for that very reason I was shown mercy so that in me, the worst of sinners, Christ Jesus might display his unlimited patience as an example for those who would believe on him and receive eternal life. Now to the King eternal, immortal, invisible, the only God, be honor and glory for ever and ever. Amen. (1 Timothy 1:15-17)

Why are we here? That is a question we ought to ask, and consider, in regards to our own lives—how we are living, and why. But discussing the meaning of our lives is not why I am speaking today. My question today is, why are you here at this gathering? Each of us is here for our own reasons, and today I want to explain why I am here.

People come together after someone has died for many different reason. Often people gather after a death to provide and receive comfort and encouragement as best as they are able. Where is comfort and encouragement found? I find my comfort and encouragement in what God has done in Christ Jesus.
My comfort and encouragement today is not found in the good things Grandpa did in his life, whatever they might be. I have not come here to remember the good things Grandpa has done. Like all men, Grandpa was a sinner, and, even as the apostle Paul said of himself, it can be said that he was the worst of sinners. We are all the worst of sinners, and in knowing that my comfort is found in God’s mercy. Today, I reflect on God’s mercy, and love. Today, when I look back on Grandpa’s life, that is what I remember. That is what I am here to remember.

God showed His mercy and love in Grandpa’s life—both to Grandpa, and to us through Grandpa. God showed mercy and love to Grandpa in bearing with him in his sins, and equipping him, in spite of his failures, to do good. And God has shown us mercy and love in giving us a father, and grandfather, like Grandpa. God has used Grandpa as a vessel of His love in our lives, as many of you here can testify. In the weakness of Grandpa God is revealed, and in the blessings of Grandpa God is revealed. These past three years of Grandpa’s life were hard—hard for Grandpa, and hard for all of us as we watched him succumb to Alzheimer’s. Perhaps especially hard in the last weeks as we watched him approach the end. Some people may want to forget those hard times, but I don’t. I am here to remember those hard times, and I hope I never forget them. For it is in the hard times that we most clearly see, and feel, the love of God. And it was in these last years of Grandpa’s life, and in the final days of his death, that I saw clearly the mercy of God. I don’t want to ever forget that.

When I look back on Grandpa’s life I am comforted, and have hope, because I see the faithfulness of God. More than just comfort and hope, I rejoice in what God has done.

Why am I here today? I am here today to remember what God has done. To remember what God has done in Christ Jesus, and how that love of God in Christ was poured out through the life of Grandpa. For those who are in Christ, the hope is this:

[W]hen the kindness and love of God our Savior appeared, he saved us, not because of righteous things we had done, but because of his mercy. He saved us through the washing of rebirth and renewal by the Holy Spirit, whom he poured out on us generously through Jesus Christ our Savior, so that, having been justified by his grace, we might become heirs having the hope of eternal life. This is a trustworthy saying. (Titus 3:4-8)

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The Burden

(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.

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Laughter Through The Tears

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.

Grandpa smiling

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.

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The Empty Couch

Edit: This was originally posted elsewhere. I am reposting it here for those who don’t read my writing elsewhere.

Grandpa on the couch

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.

studying Cinderella

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.

Only memories remain

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.

Absent

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On Grief

Part I: Grief

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope.” – 1 Thess. 4:13.

We need to be careful when we talk, and think, about grief. It is easy to handle the topic in a fleshly way–to over-intellectualize or over-emotionalize the subject. On the one hand, when not faced with grief it is easy for some people to rationalize the topic and pontificate as if they know exactly how it is. On the other hand, when in the midst of grief, it is easy to become lost in one’s own feelings. Surely it is true that “Each heart knows its own bitterness” (Prov. 14:10) so the wise will take care in speaking to a grieving person. And certainly as “The heart is deceitful above all things and beyond cure. Who can understand it?” a person ought to be cautious in thinking they understand the depths from which their own grief comes.

But, as Christians, we have been given a special command. Do not grieve like the rest of men, who have no hope, Paul says.

What does that mean?

How are Christians to grieve? What is Christian grief, as opposed to the grief of unbelievers? Are Christians supposed to grieve at all?

As a person, how I would react to various occasions for grief would depend on the circumstance. If my four-year-old child ran out into the street and was killed by a cement truck my feelings would be a bit different than if my wife of ten years died from cancer. And my feelings about a grandfather that died at eighty-one after three years of struggling with Alzheimer’s would be still a bit different from that. The unexpectedness of the death, and how close we were with the deceased, and a multitude of other things all affect what we feel about a particular death. But no matter what we feel at the moment of observing death, what we believe should be a universal bedrock which informs and affects all that we experience.

How should the truth of Christ inform our grief, both in regard to what we think, and feel?

I have trouble understanding how a Christian ought to react to death–I mean, in the sense of coming to terms with death as observed in the living of our lives. Anyone, Christian or non-Christian, is going to be shocked if they see someone run over right before their eyes, bloody body parts flying everywhere. What is godly grief? I struggle with that. To me, it is very clear that there is such a thing as godly grief. The New Testament explicitly speaks about grief over our own sins and godly grief over our own sins is intrinsically necessary for a right relationship with God. The New Testament also speaks about godly grief over the sins of others. Paul can speak about being grieved over the sins of others against the body of Christ, and it is written about how we can grieve the Holy Spirit. But if grief is the proper reaction to sin, is it the reaction believers should have toward death?

Prior to the coming of Christ, the answer would have seemed obvious. But now that Christ has won victory over the grave, and to be with Christ is better by far (as Paul says) then we must ask, “What are we, as Christians, grieving?” If we are not to grieve like the rest of men, as Paul says, how are we to grieve differently over death? Or are we not to grieve at all?

I am not happy with what I see as the typical “Christian” response to the question of grief. First, there seems to be an acceptance that any and all grief is right and good. Second, the answer to grief appears to be found in giving the assurance that the deceased is now in heaven and happy, etc, etc. In the first matter, the acceptance that all grief is one and the same does not acknowledge, or seek to understand, the distinction Paul makes. In the second matter, the assurance that all deceased are in heaven is either wrong theology (universalism), wishful thinking, or deceit. Not everyone we all know is going to heaven. There are people we have loved in this life who are going to hell, and God hasn’t given us the inside scoop to know the hearts and minds of people. Further, often the person offering comfort to the grieving is someone who hardly knows the deceased at all. Where does the Bible tell us the comfort people by offering dubious declarations about the eternal fate of others? All we can see are the words and deeds of people, and that can be a pretty cloudy measure of ones relation to God. It is God who knows the heart.

Can Christians rightly grieve over death? If done from a Godly, biblical, perspective, the answer is yes. The reason we can is that while Christ has been victorious over the grave, we have not yet come unto the full experience of that victory.

I am reminded of the statement by Paul that “Godly sorrow brings repentance that leads to salvation and leaves no regret, but worldly sorrow brings death.” (2 Cor 7:10). The statement was directed toward the issue of sin, but I think we can rightly also say, similarly, that godly grief leads to life, but worldly grief leads to death.

The focus of our grief is of key importance. Is your grief self-centered? Then it is idolatry, and an act of rebellion against God. Is your grief centered on God? Then it will produce life.

As an example: It is right to grieve over the death of your wife. That death is a very clear reminder that creation has not yet experienced the fullness of redemption. The termination of one of the greatest forms of earthly fellowship (marriage) is a a stark reminder, that we have no yet entered into the eternal fellowship of the new heaven and earth. Rightly understood, that pain and longing will teach and reminds us–both of what God is presently doing in delaying that day of His return, and what He will do in bringing that day about. We grieve that we do not yet experience the fullness of redemption, but yet we rejoice in the hope that is in Christ.

Now, on the other hand, one might lose their wife and grieve, thinking: I miss my wife, I want my wife, it wasn’t fair of God, it wasn’t right, I hurt, if God loved me why would He let me hurt . . . and so on. My point, if crudely demonstrated, is that a grief which is the expression of our self-centeredness–our want, and our pain–is an expression of our rebellion against God, and does not lead to life. It is only when our pain, and our want, is a partaking of the want of Christ, and the pain of Christ, that it is a grieving that is pleasing to God. This present created order is pain and grief to God, one which He presently bears until the fullness of redemption is accomplished.

Grief is not easy. It is not easy, because in the midst of this powerful experience one must face the conflict between the old flesh and the new spirit. We all–in our sin and weakness–want to grieve after the natural man, screaming at God, “Why did you allow me to hurt this way?” while at the same time the Spirit calls to grieve with God over this present fallen order, and to long for the new creation. To understand what in us is coming from the Spirit and what in us is coming from the flesh, is a difficult thing.

Part II: Grief to Joy

In the wake of Grandpa’s death, I have not found myself overwhelmed with grief. I attribute this to the result of God’s grace at work in me, and the many prayers of others on my behalf. I have not been crushed, or overwhelmed by events. I have had a great amount of peace. Mostly, I have found myself processing the events by pondering them, rather than by weeping and great angst. Not to say I haven’t had a few tearful moments–because I have–but largely I have simply pondered what has happened and tried to sort through what I am feeling, why I am feeling it, and if it is right.

I do not pretend I have myself all sorted out.

I think, perhaps, I have been grieving a long time, and that the death of Grandpa was more the end of my grieving than the beginning. That is what it feels like. That Grandpa is gone, and I will not see him again in the flesh during this life is sad. There is a quiet grief in that. But the real grief–spiritual, and fleshly–the real place where I feel anguish, and the sting of tears, is when I think about all the times Grandpa suffered over the past three years. When I think of grief I don’t think of the fact that he is gone, but instead the memories of the sorrow I have seen in his life struggling with the daily increasing loss. When I think of grief, I think of the grief Grandpa suffered, and the grief I suffered in seeing him suffer for three years and not being able to take that suffering away. The desire of my heart was to make him whole, and the grief is that for three years I could not. That hurt–that hurt far more than the fact that he is gone now–is the grief I had. I grieve now mostly only insomuch as I remember that past, and grieve that it had to be so.

What I feel now–when I am not recalling the past–is relief. For three years I carried Grandpa’s burden, which was my burden too. For three years we carried the burden of Alzheimer’s together, and I grieved silently inside myself ever day. There were times when that grief was acute, and the last time was certainly in the final days leading up to Grandpa’s death when my ability to do nothing was summed up in the little eye-dropper of water which was all I could give him. I grieved that he had to die with the suffering he did, and I grieved that I could not say “Be healed!” and make him whole. But when he died, that was over.

Several nights before Grandpa died–I think it might have been Wednesday night–I was sure Grandpa would die that night. He didn’t. With each passing day and night that he lingered I became more emotionally numb and exhausted. My Aunt Annie stayed over Thursday night because she was sure Grandpa would die that night, and he did, at 5:00 AM Friday morning. When she knocked on my bedroom door and told me, I didn’t feel an overwhelming rush of grief. I felt many things–still numb and exhausted, with a sense of finality, sad, and some muted grief. But was I most felt was that a burden had been lifted. I felt that Grandpa’s burden had been lifted. I felt that my burden had been lifted. It was not a happy thing–the ultimate happiness does not come until Christ returns–but it was the feeling that a great burden and sorrow had been lifted away which brings with it a sense of relief. Not “burden” as in the burden of sin (a burden which none of us can bear) but rather the taking away of a burden I had been called to bear for a time. It was one burden that I would no longer have to bear. A burden Grandpa would no longer have to bear.

So what have I felt in the days since Grandpa died? Relief. Release. Joy.

Joy–how can you have joy, someone might say.

Joy can be hard to understand. People often confuse joy and happiness. Happiness is an emotion we on occasion have the privilege of experiencing in this life, and shall have in abundance eternally. It is a product of circumstance–in the new heaven and earth circumstance will produce everlasting happiness. In this present world there are indeed many circumstances which are not happy. In contrast with the situational nature of happiness, joy is the product of the inward relationship with God. Those who do not know God have never experienced the truest form of joy. All who know God, and are known by Him, know some measure of true Joy. The closer we walk with God, the more we know joy, no matter how unhappy our circumstances. Joy can be a quiet thing, since it is neither the product of, nor intrinsically marked by, emotional thrills. I am not happy that Grandpa died, but I know joy and peace clearer than I did before.

But I can’t really express that joy, or peace, to you. Not fully. It is a joy, and peace, a rest, and relief, found in the experience of the faithfulness of God. To really know, you would have to know all the prayers I have prayed, and how with finality God had demonstrated them answered. To know, you would have to know how I agonized before coming to take care of Grandpa–how I agonized over being too weak, being unable, being afraid. To know, you would have to know the pain and weakness I faced these past three years, in the struggles and burdens I did not think I could carry. To know, you would have to know how I was on my knees before God, in weakness and and prayer over a path I did not see how I could walk. To the degree that I have been able to share those things with you, to that degree you can know and share my joy that God is faithful, and loving in a way beyond our comprehension.

The grief was a hard burden before Grandpa died. A hard burden then not only because I had to see it fresh each day, but also because I had to carry it alone in my day-to-day life. I could not share the true depth of my inner grief with Grandma, and I did not dare even allow the least outward expression for fear she construe it to mean “I couldn’t bear to take care of Grandpa anymore” and so ship him away. Even within the last week of his life Grandma told me that “If you can stand it, we can call an ambulance and have him taken away.” And so, for three years, I have had to keep the true cry of my heart to myself in my daily life. It is the great irony of life that now that I do not have the fresh presence of that grief daily that now it is more acceptable, and I have more freedom, to express grief in tears and sorrow. Certainly I will shed a few tears now at the memory of grief. But the memory of grief that I have left is nothing compared to the burden I carried so long, and is far outweighed by the joy I have in the present experience of God’s mercy, grace, love, and faithfulness.

It is this perspective that makes it rather easy to deal with what has come after Grandpa’s death. With all the family drama that must be dealt with, with all the legal forms that must be filled out, with everything that is coming down on my shoulders–all of it right after the person I have cared for intimately for the past three years–it could be horrible. It could be. But it isn’t. The regular irritants of life are still there, but it all doesn’t feel like that much of a big deal. Grandpa’s memorial gathering is this coming Sunday and I am really not the least concerned about it. Maybe I will shed a few tears. I expect probably not. Maybe a few people will get their pants in a bunch about something. But I am not worried, because after all I have been through, and after all that God has done, whatever little song and dance people want to have, is very, very, unimportant to me. As far as I am concerned, everyone who comes to this has missed the truly important show. Yes, at the gathering I will say a few words, but they are only a few words that can hint at what I have experienced at the hand of God. I think most people won’t even begin to hear it.

To anyone who wonders how I am handling it, that is the best answer I can give. I am not strong, or able, but God is, and prayer is effectual. To God belongs all praise.

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Saying Goodbye

[Edit: The below was originally written for a more public audience not kept as informed as people who read Twilight. But I decided to repost it here because there is material not posted previously, for people who do not read my public blogs]

(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.

A happier day, about a year ago
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Grandpa is Dying

Given the many avenues of communication, perhaps most people reading this blog already know the following: Grandpa is dying. He may not live out today, and I certainly doubt he will live out the week.

Perhaps I will write in more detail sometime in the near future. Those of you who have been following this blog already knew that I expected him to die before the winter was out. The simple story is that it just happened a little bit faster. Last week he caught a mild cold I had. He did not get terribly sick. But when he got sick he got tired, and he stopped eating and drinking whereas before he had been eating and drinking a little. He began to slip into a increasingly comatose state.

An e-mail I sent this morning:

***

He is alive this morning, but I am not sure he will ever awaken again. He is resting quietly, but I don’t know if he has slipped into a light coma or is just sleeping deeply (what difference does it make?)

I started playing the Bible on CD for him yesterday. I thought it would give him something to listen to while he lay there.

The most effective thing I found to feed him was ice cream. It was something solid that I could slip into his mouth but then would turn into a liquid which could be swallowed. I got some into him, yesterday, and he swallowed some. But some of it just sat in his mouth until it eventually came back out as a syrupy drool. It may have been a combination of forgetting it and forgetting how to swallow. At least he did not seem to mind it too much, and may have even appreciated it.

When Teman was here last night I switched Grandpa’s position and seemed to be able to get him into a comfortable position. He appears to have had a quiet night, and continued to “sleep” even as a wiped up his face a bit and moistened his mouth with a water dropper. He sleeps so calmly and breathes so regularly you almost wouldn’t think anything was wrong and that he would wake up in an hour like regular old Grandpa, like he has so many times before.

Except, you know he won’t.

***

It is possible Grandpa may live out the week–some people have an amazing ability to linger. But I suspect not.

I started taking care of Grandpa September 24th, 2006. We won’t quite make it to the three year anniversary, that is almost certain.

As always, your prayers are much appreciated.

In this time, my thoughts turn to these passages (as I suppose the thoughts of anyone sitting with the dead do):

For I am already being poured out like a drink offering, and the time has come for my departure. I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing. (2 Tim 4:6-8)

I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. [. . .] I desire to depart and be with Christ, which is better by far (Philp. 1:20-21,23)

Then I heard a voice from heaven say, “Write: Blessed are the dead who die in the Lord from now on.”
“Yes,” says the Spirit, “they will rest from their labor, for their deeds will follow them.”
(Rev. 14:13)

He who testifies to these things says, “Yes, I am coming soon.”
Amen. Come, Lord Jesus.
(Rev. 22:20)

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The Struggle

I want to be strong. I don’t want to have struggles.

But, as James says, “We all stumble in various ways” (James 3:2).

I don’t want to be a whiner. Whenever I think about my problems, I think about how much of a sniveling, self-centered, whiner I am. There are lots of people who have it worse than me. I know it. I don’t have it bad at all. I know it. I should be thankful every day. I know it.

But I’m not.

When I think about that failure of mine, my natural reaction is to tell myself to shut up and get on with life. Nobody said it would be a picnic. Be stronger.

Certainly it is inappropriate to be self-centered, to be consumed with sharing our troubles, and acting if the world is all about us. That is an idolatry of self, where self is most important. But it is also wrong to think we can be self-sufficient. In wanting to be strong, I want to be self-sufficient. I don’t want anyone else bearing my burdens. I would like to think I can conquer all my troubles, but short of that I would settle for keeping them from troubling anyone else. That attitude is idolatry too. That is the idolatry of pride.

As Christians we are called to “Carry each other’s burdens” (Gal. 6:2).

This is a hard command for me. It can be very hard to bear the burdens of others, but I find it even harder to share mine. I have been thinking recently, and have concluded that I have been remiss in this regard.

We are commanded to “pray for each other” (James 5:16) and appropriate prayer is certainly aided by knowledge. So I will share some of my struggle, and if it all sounds whiney and self-centered, add that to the list of things to pray for me about.

***

The situation with Grandpa has gone through a process of change. He requires less work now. It feels as if the change from how it was two years ago is the difference between night and day. He requires less assistance, has less disasters, and sleeps much better at night. I am getting better sleep at night, and since Grandpa basically sits on the couch all day his required need for assistance is pretty much limited to mealtimes. Physically, there is much less demand on my person—as is evident by all the projects around the house that I have been able to undertake in my greater freedom.

Back in the day when I was dealing with constant midnight bathroom disasters, Grandpa wandering everywhere and getting into trouble, and all around household drama, it was easy to admit that things were hard. It was all physically grueling. I tried to avoid exaggeration, or presenting it as a pity-party for me, but anyone who reads back over my past entries can see that I shared a good deal about my physical struggles.

But when all of those brutal long nights diminished, and relief came from those labor-some days, everything was supposed to be better. I imagined it would be better. It had to be better, right? There were days when I looked at my greater freedom and reflected on how months ago I would have thought my current situation impossible. Everything was better, right?

Except, I’ve discovered that it was not.

Now, I don’t want to give the impression that I am living some miserable tragedy, the most afflicted of all people. I don’t need, want, or have any use for people feeling sorry for me. I have good days, I have bad days, and I have average days. But as much as I don’t want people feeling sorry for me, there is more of a struggle than I have wanted to admit—a struggle that needs to be admitted.

Obviously the relief from the previous physical strain of caregiving is very real, and I am certainly thankful for that blessing. But there is more to life than physical labor, and as strange as it might sound to some people, I realize now in reflection that there was a way in which that situation of physical labor suited me. All of it was very hard—grueling even, at times—but at least I was “doing” something. I was making the situation better. I might go to bed every night exhausted, and I might doubt whether I had done the absolutely best I could have done, but at least I could look back on the day (subconsciously, perhaps) and see everything I had done. I had made all that food for Grandpa to eat, which he was so happy to eat. I had helped Grandpa go to the bathroom, which he was so glad for that help. And so on. I was holding the world together, I was carrying the world on my shoulders, and, as hard as that was, it suited my vanity. By my nature I am the type of man who is willing to sacrifice a lot to “accomplish” or “fix” things and so for a long while—in spite of the personal toll—I could feel very successful in what I was doing.

Then things began to change. Of course the reality of how I was handling the old situation, and how the new reality would affect me was not something I could see at the time. But looking back, I can see more clearly. Before, I could “fix” Grandpa’s failures by making up for his declining condition. I would help him through the various tasks of the day, and then, as the situation became worse, I would do those tasks for them. Hard as it might be, I was “doing” something and being “successful” so life was good (so to speak). The turning point came when I was no longer able to “fix” or “make up” for what Grandpa lacked.

This change did not happen all at once, and I am sure it could be seen in various aspects of life. But for me, in my own mind, I chart this path in Grandpa’s increasing failure to eat. I think I really started noticing this battle about a year ago, and from that point on it has been a battle I have been loosing by inches, but surely and steadily loosing. Some of it has been a very cognizant struggle—I have mentioned in other posts about various bad times when Grandpa ate very poorly—but a lot of it has not been so explicitly recognized by me, and all of this has profoundly affected me. It has affected me not in a break-down-crying sort of way, but in a way that eats away inside me in a slow, slow, way. It hurts in a quite way that I try very hard to ignore.

Perhaps you will understand the meaning behind Grandpa’s eating (or lack thereof) if I explain it to you this way: Back when I first came to live with Grandma and Grandpa I was told that Grandpa’s weight was down, and the doctor said he needed to eat more. I dutifully gave Grandpa breakfast, morning snack, lunch, afternoon snack, supper, and bedtime snack. I bought all sorts of snacks and desserts for Grandpa, and carefully heated them up and served them to him. He ate and enjoyed what I fed to him. When I took him to the doctor his weight was up. I felt like a success. I was taking care of Grandpa, I was feeding him, and he was clearly appreciating it. Eating became the measure of success. I couldn’t reverse the effects of Alzheimer’s on his mind, but at least I could make sure he was well fed.

Except, that couldn’t last forever. If you peg your success on any worldly measure you will end up failing, even if it seems like such a noble measure as making sure your Grandpa has enough to eat. Slowly but steadily it became harder to make sure Grandpa had enough to eat. At first it was just harder, but I could still do it. At first I couldn’t make him gain any more weight, but at least I could keep him holding steady. It was a battle I was losing, and I was desperate to stem the tide. Last summer was when it really began to become seriously worse. Some of my personal notes paints the picture:

Grandpa Ate

07.13.08

2 Cups of Coffee

1 Can Nutrient Drink (350)

1 Candy Bar Reese (63)

1 Spoonful of peanut butter (190)

1 Serving of noodles and cheese (200)

1 Slice of cake (250)

3/4 Can Nutrient Drink (263)

Total Calorie Estimate: (1316)

07.14.08

2 Cups Coffee

1/4 Can Nutrient Drink (88)

1 Serving Cream of Wheat with 1/2 cup milk (185)

1 Small serving of noodles and cheese (120)

1 Can Nutrient Drink (350)

1/2 Cup Cottage Cheese (120)

4 oz. Grape Juice (90)

2 mini donuts (212)

1/2 Can Nutrient Drink (175)

1 Junior Ceareal Bar (70)

Total Calorie Estimate: (1410)

Grandpa’s weight as of 07.14.08: 122 lbs.

Note: BM today, completely constipated.

You get the picture. I was trying to document the facts, trying to figure out some battle plan, some way to overcome. And what was the result? Fast forward a year, and what do we have? Breakfast is half a serving of Life Cereal (80 calories) lunch is maybe 1/2 a serving of noodle salad 1/2 can nutrient drink, and half a banana. Supper is half a serving of cream of wheat. If I’m lucky, on average I’m getting half as many calories into Grandpa as last year.

I’m failing.

Of course, I don’t rationally tell myself that. I told myself that I knew his eating would get worse, this is how the disease went, and I couldn’t stop it. I told myself it wasn’t my fault, you could only do the best you can, and it wasn’t a big deal. I wanted to will myself into making it not a big deal. But sometimes no matter how much you head explains something, you heart still won’t accept it. On the really bad days I would admit the crushing weight I felt when Grandpa ate next to nothing. The rest of the time I tried to pretend, tried to think, that life was just going on normal, with nothing wrong.

But everything was wrong, and in ways not easily to accept for myself, much less articulate. It is one thing to just say “He isn’t eating.” That is a dry, abstracted, fact. We can all sit back and say, “Gosh, that’s too bad. Wish we could do something about it. Don’t feel too bad, it isn’t your fault.” But let’s say your son or daughter had a rare disease that made them not like to eat. It was a disease that was slowly getting worse, so they disliked eating more and more. Daily, you could see them getting thinner. You know they need to eat but when you ask them if they are hungry, sometimes they say no. And sometimes they do say they are hungry, but when you ask them what they want to eat, they don’t tell you anything, and when you offer them all sorts of things to eat—from ice cream down to toast—they say they don’t want any of it.

What do you do?

There is the pain of watching someone waste away. There is the anguish of watching someone in your care waste away. Then on top of this there is the feeling of rejection. For a caregiver (be it mother, father, or anyone else) the most basic personal measure of success is that the people in your care are fed. If your efforts to feed are spurned it feels like the ultimate rejection of your care. It says: You’re not sufficient to care for me, you can’t even please me on the most basic level.

In my mind, I know that isn’t what Grandpa is saying. In my mind, I can work out all the permutations of how the Alzheimer’s is affecting him so that he won’t, or can’t, eat. I can try to put away what I feel—I can tell myself to ignore what I feel—but that doesn’t make what I feel go away. What do I feel? I feel like I want to give up. When Grandpa says no, he doesn’t want to eat, when he says “Stop shoving that in my face,” when he says, “I’m not hungry,” even though he hasn’t ate anything in six hours, when he pounds the table and says, “Damn it! No more!” even though he’s only ate three spoonfuls, when he says, “Please, I don’t want any more,” when he only eats because I hound him and only to make me happy . . . what I feel is that I just want to give up. I want to get up, walk away, and never come back.

Because it is hard? No, it isn’t physically hard. The act of holding up a spoon and saying, “Here, have a bite” is very easy. But it is very hard to face my failure, and the rejection. While I don’t intellectually sit there and tell myself it is my failure (because I can reason out that it is the Alzheimer’s) this cold voice of reason doesn’t make me feel any less like a failure than deep down inside I could feel like a success when two years ago I got Grandpa lots of food to eat. My situation has been turned on its head, and meal times are often a mockery, a parody, of what I once did. Are three spoonfuls of beans a meal? It is like my face is being daily ground into the futility of it all. What is the point? What kind of care is this?

I had to let go. Last summer I was beginning to grapple with the looming possibility of Grandpa not eating enough to maintain his weight. At some following point it became absolutely clear that he was not, and that left me facing a choice. I could redouble my efforts, try to make him eat every minute of every day, constantly trying to shove food in his face. I could become more insistent at meal times, demanding that he eat, perhaps become enraged, or hysterical at his “willful” starving to death. Or else I could acknowledge that I was not going to win, and let go. When Grandpa said no, I could just stop.

But in letting go, I felt like I lost something. In letting go, I felt like I had given up, and with that all the vigor went out of my care. In admitting that I couldn’t win, it was like I had given up the fight. When you have lost the fight, it feels pointless to continue the battle. Outwardly, I don’t know if anything changed in my care for Grandpa—I can’t honestly judge myself that well. But inside me things felt different, and it didn’t feel nice.

With this change, I was thrust into the murky realm of moral hazards. Before, my care was based upon the premise that Grandpa was not competent to know what his needs were, and it was my job to determine what he needed, and provide 100% of that need. When he had trouble I didn’t just say, “Oh well, that’s life” and ignore it. No, I gave help. When he was weak, I provided the strength. There was no coming short of the 100% needed. But then when I was forced to admit that I couldn’t make 100% anymore—for example, I couldn’t make him eat 100% of what he needed to eat anymore—how close to 100% is good enough?

When do I get to stop? After Grandpa says “no” once? Or is after he has refused twice? Or maybe three times? Because, sometimes if I wait a little while after he has refused any more food, I can get him to eat more. Sometimes just one more bite. Sometimes a lot. And how long should I try to get him to eat? Should I spend all morning trying to get him to eat breakfast? He may never eat 100%, but if I spend the whole morning and get him to eat 80% instead of 60%, shouldn’t I do that? And how hard should I try to find something that he will be willing to eat? Should I spend all afternoon trying to find new recipes that he might love? Do I try to offer him a taste of every food in the house, even if he says he doesn’t want anything, because maybe when I stick a taste of something in his mouth he will decide he actually does want to eat that thing?

Obviously I am taking it to the extreme, but it is to illustrate a point. Once I can no longer reach 100%, how hard should I try to get how close? While it may be obvious that I shouldn’t spend all day trying to get as close to 100% as possible (like it is some mania), and it may be just as obvious that I can’t just give up entirely and settle for 0% . . . what is the acceptable answer in-between? And how do I escape the feeling that I am making decisions about the life of another, decisions I shouldn’t (or don’t want) to make?

I am not perfect. I often feel lazy, frustrated, and selfish. Often I am. And if I’m feeling lazy, frustrated, and selfish, and I must make a decision about how much I will do for someone else today—what am I going to decide? Anything short of spending 100% of my time trying to get Grandpa as close to getting enough to eat so he won’t starve can be presented as the vile effects of my lazy, frustrated, and selfish person. The accusations can then go round in my head:

You did do that because you are selfish.

You did do this because you are uncaring.

If you were more loving you wouldn’t think and act this way.

Some such accusations are clearly lying accusations from Satan. But, on the other hand, I am a sinner and often enough I could have, and should have, done better. And sometimes I just don’t know what the “right” course of action was. The accusations are always there, and my less than saintly feelings, and the fact that there is no one answer that is right for breakfast, lunch, and supper, or one answer that is right for every day. It all depends on how Grandpa is that day, and I must judge that through the prism of me every day.

By the grace of God I am not daily crippled by a weight of guilt over this. But the cloud of moral hazard that hangs over every day and every meal with Grandpa is a struggle. I may not go to bed every night tormented with with guilt, but the accusations are always there, hovering, and I rarely go to bed happy with myself. I can pray, “God forgive me for my failures,” but I’m not even always sure which ones were failures, and which ones were just the realities of life caring for Grandpa. And if I have failed, I often don’t know how I should seek to live tomorrow differently. In this situation all I can do is pray, and get up the next morning and live, and remember these words:

The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will. (Rom. 8:26-27)

And I try very hard to not overly judge or excuse myself, but rather daily commit the matter to God, acknowledging that I am a sinner, and whatever good I might daily do (whether recognized by myself or not) is only by the grace of God. And to keep in mind the words of Paul:

It is the Lord who judges me. Therefore judge nothing before the appointed time; wait till the Lord comes. He will bring to light what is hidden in darkness and will expose the motives of men’s hearts. At that time each will receive his praise from God. (1 Cor. 4:4-5)

But it is hard. And besides wanting to walk away from what feels like my failure, there is daily the desire to hide from the every present quandary of moral hazard. Since I can’t literally run away I try to escape other ways. I try to put away what I feel, to lock it away in the back of my mind, pretending that nothing is a big deal and everything is normal, and when that isn’t enough—as it never is—I try to hide and block it all out by filling my mind with others things. It’s not that I go around every day thinking, “Oh, I’ll go hide, I’ll escape from what I don’t want to deal with by filling my life with other things.” But I can see clearly that is what I did.

To a degree this was masked by the very legitimate fact that, as Grandpa has needed me less, I have more free time. What was I supposed to do with this time—sit around and twiddle my thumbs? If not, then I had to decide what I would do with my time. And thus I would throw myself into this or that project, and suddenly that which was just supposed to “keep me occupied” in my spare time, became something which I poured myself into, something which filled my thoughts with something other than the endless unanswerable questions about Grandpa, something besides that dark cloud which hovered over me. I would immerse myself into the project—but it was escape, it was hiding, and when I came back to the surface there was Grandpa still, with all the questions and problems still there, and on top I now could feel guilty for having abandoned him, and selfishly done what I wanted to do.

Hiding, and running away, are not the response of faith, or a fruit borne of grace. It is the fleshly response to trouble and it brings no peace, or solution. Rather, the problem continues to fester, and instead of going away it gets worse. I wrote the draft of a novel, I published books, I built a patio, I built barn doors, I built a shed, I build a cabinet from scratch. I did all sorts of things, and no matter how much I did it never felt like enough, and never made me feel better for long. It all ended up feeling futile, pointless, and worthless. So I would vacillate between pouring myself into doing something, and then doing nothing. But as the something felt worthless, the despondent nothing felt no better, and so back I would go again. Recently, in reflecting back on this, I told someone that I felt like a dog chained to a tree running around in a circle and the faster I ran the shorter my chain became. Grandpa is dying, and trying to escape the implications for me as his caregiver is foolish.

When a problem is not dealt with in a Godly manner, it only becomes worse. While all the projects I undertook were not in themselves sinful—and actually were productive deeds—they were sinful insofar as they sprung from an attitude of faithlessness, not faith. And as they reflected an attitude of not living in faith, but rather by works, they illuminated deeper problems. Attendant with all of this “escaping” efforts, my struggle with my attitude, thoughts, and desires increased—the entire gamut from simply feeling aggrieved about my lot in life all the way down to sexual impurity. I don’t want to come across as overly dramatic—It wasn’t like I started screaming at Grandpa, and staying up late watching late night TV trash and taking out a subscription to pornography websites. None of us are as kind as we should be, but I found I was struggling with even being as kind as a had been, or serving with the cheerful and willing attitude I had before. None of us are as pure as we should be, but in a world full of temptations and sinful opportunities I felt I was struggling with the temptations of the world more, and stumbling more than I had been. It all came together in the crushing feeling that I didn’t have the strength to stand, or go on. I felt utterly, utterly, spent. Not physically—but inside me. Emotionally, spiritually.

And that is the place God was bringing me. It is, in truth, the place He daily seeks to bring all of us—the place of utter dependence upon Him. We don’t depend on Him once when we “become” a Christian and afterward we go back to struggling through life by our efforts—no, when we hear the call of God it is a call to daily living out that dependence on Him. So easily, and so often, we wander away from the truth and find ourselves in a dry and weary wasteland.

Back in the day, it was easy for me to admit the struggle when things were physically hard. I could then talk about my struggle, and mouth words about how weak I was. But even when I felt weak I supported myself with my own strength—the solace of my own efforts and accomplishments. I did get through the hard part—physically—but that was when I found out how weak I was. It was when I had “overcome” so much that I was left to face the futility of all I had overcome, and the failure of all my efforts.

It is not our strength and effort that counts, but God’s. It is in the face of death that the futility of all our efforts is most clearly revealed. I want to be clear: I’m not afraid of Grandpa dying. Many caregivers will speak about some overwhelming dread at the prospect of the time when the person in their care will die. They find it scary, frightening, even terrifying. But for me it is not Grandpa’s coming death that I struggle with—it is with my personal futility and lack that I struggle. In death what is the point of our labor? In death where is the success? If there is no point, and no success, then why continue?

The answer to that, ultimately, comes in the resurrection of Christ and the result of that work—the future restoration of all things. The answer is found in the love Christ showed in dying on the cross, and the love we are called to show as it had been shown to us. These are answers that shatter all worldly measures, and reasons. They are answers we cannot grasp by ourselves.

I know that what I am doing is right. I have no doubt that God has called me to what I am doing. I know that today I have been called to minister the love of God to the dying. But often what we know by faith clashes directly with what we feel. I don’t feel happy. I don’t feel successful. I don’t even feel capable. In short, the struggle is that I find myself inadequate to minister Christ to a dying man. Because I am. Because we all are. It is not something we can manage by our own strength or wisdom. It is something given to us, by grace, through a walk of faith.

What is the solution? To trust in God. As Jesus exhorted his disciples on the night of his betrayal: “Trust in God; trust also in me” (John 14:1) We are assured time and again in the Bible that God is faithful and those who trust in Him will be lifted up, and never put to shame. Recognizing my struggle, and where I had fallen, was the first step to turning and being refreshed. What I needed most of all was to learn that the need was not to pray that I would be delivered from my situation, or that I would be made strong, but rather that I would cease to strive in my own strength and accomplishments, to trust in God’s strength, and to be given the grace to walk by faith through the situation.

It requires so little from us, and yet everything.

It is not as if life is “all better” now. It is still a daily struggle, but for the present I do feel better. It is when we begin to see these things clearly, to see where we have fallen and to turn from that way, that light again begins to break through. I know that as it has been a struggle, the battle is far from over. I know that I don’t have the strength to carry this to the end—because that is what I have tried, and know will not work. Because I don’t have a spiritual well deep enough in and of myself to draw from in caring for a dying man.

I will still struggle, I will still stumble. But I pray that I will not try to stand by my own wisdom, or strength. I know that in looking to God I will be given what I need to walk this path and that as I, and others with me, bear these burdens Christ Jesus will be glorified.

I had not talked about this because I didn’t want them to be real, I didn’t want to burden other people, I didn’t want to be weak, and I didn’t want people feeling sorry for me. But besides all of that, I also didn’t speak because I (inwardly) cringe at the all too typical response: “Is there anything I can do? Can’t anyone do something?” I know such people mean well, but on the one hand such questions are a parroting of my own self-doubt and self-accusations (Is there anything I can do? Can’t I do something?) and on the other hand it is a parroting of my own empty wish—I wish something could be done. But the struggle—the very problem—is that nothing, absolutely nothing, can be done. I can’t, you can’t, nobody can. We’ve reached the end of the road, and how are we going to face that?

There is only one thing we can do, and that is pray. So if you wish to do something, remember that prayer is the only thing you can do now, and it truly is effectual.

Jesus Christ is the ultimate example of faith, and obedience. But he didn’t look forward to his crucifixion. He sweated blood in the garden, and prayed to the Father that it might be taken away. Then he got up and went, willingly and faithfully, to his crucifixion.

I am not looking forward to this coming winter. There is no reason why Grandpa will surely die this winter, but given his lack of eating and the chance that his frail body will become sick, makes it seem very likely. If he dies, in that final process of dying I will be forced the face the final crucible of what I have already undergone. It is the long hours by a death-bed when every past deed can be judged. And I feel all sorts of conflicted feelings—all of which I try to squash and shove away and lock behind some door in my mind. So I will admit, because I must, that in some black little part of my soul I wish Grandpa would die because I am tired of this dying dragging out an inch at a time and I want to be free to do my selfish things. And in another part of me I cherish these moments we have and look with sadness at the day he will be gone. And I don’t know what to feel or think, and it seems like everything I do feel or think doesn’t feel very godly or right. I just wish I didn’t have to feel or think anything.

I tend to say I am dreading this winter, but perhaps that is my penchant for being dramatic. I don’t lay awake in bed thinking about it, or other things I associate with something I truly dread. But I am trying to not think about it, to live in some weird tension filled existence of denial and admittance.

I don’t say the attitude of faith would look forward to those days of suffering and sorrow, but I perceive that at present I am indulging in some variation of the same denial and hiding that I have just spent this paper chronicling. So if up until this point I have looked back and reflected on how I have struggled, to now look forward I will say that what I need to do is not hide from the coming future, run from it, or think that I can prepare myself to conquer it, or “deal with it.” What I need to do is face it in faith, to acknowledge my insufficiency, and so pray that I might be taught and equipped by the Spirit of grace. You may pray for that also.

Further, pray that I would be encouraged and strengthened in my spiritual walk, that I would not walk as the world does, but that I would live in purity and a desire to be Christ-like. Pray that I would seek and understand what the will of the Lord is—in what I should be using my free time to pursue and do. There are many possible “productive” things that I could do, but pray that I would have wisdom to know what I should do, and that I would not do anything out of a desire to escape my current situation, or out of vain ambition, but that whatever I do, I would do it with a desire to serve and glorify God.

Pray about all of those things for me. But most of all pray that in this time, even after all earthly labor has been consigned to futility, I would be granted the grace, the love, the faith, the wisdom, to minister Christ to a dying man.

I find it appropriate to finish with the words of Paul from Romans chapter 12.

***

Therefore, I urge you, brothers, in view of God’s mercy, to offer your bodies as living sacrifices, holy and pleasing to God—this is your spiritual act of worship. Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

For by the grace given me I say to every one of you: Do not think of yourself more highly than you ought, but rather think of yourself with sober judgment, in accordance with the measure of faith God has given you. Just as each of us has one body with many members, and these members do not all have the same function, so in Christ we who are many form one body, and each member belongs to all the others. We have different gifts, according to the grace given us. If a man’s gift is prophesying, let him use it in proportion to his faith. If it is serving, let him serve; if it is teaching, let him teach; if it is encouraging, let him encourage; if it is contributing to the needs of others, let him give generously; if it is leadership, let him govern diligently; if it is showing mercy, let him do it cheerfully.

Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in brotherly love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with God’s people who are in need. Practice hospitality.

***

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Sponge Bath

Note: This blog was hacked shortly after this post was initially made. I believe everything has been fixed, but apologize to those Google Reader subscribers who were treated to some spam.

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. 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.

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Learning How to Forget

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, clean 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 brain 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.

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