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:
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)
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.
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.