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Caregiving Reality

What Once Was and Shall be

Jim and his son

How time flies, how it gets away from us like a ball from a little child or the dreams of youth. Some days it seems like only yesterday that I started caring for Grandpa Purdy, but when September comes round it will be nine years since that journey began. Six since it ended. By some measures that is a long time, but when this past week I found myself again visiting the court where Alzheimer’s holds sway it seemed like I had never be absent.

It is hard enough when you have one grandparent who takes the path of Alzheimer’s; there is a particular melancholy when you watch a second follow. As my father’s father went, so now my mother’s father follows. Grandpa O’Keefe is now well down the road of a disease which wraps everything in a fog of confusion. He is past the halfway point–incontinent of bladder, often incontinent of bowel, barely able to walk and nearly unable to dress himself–but how close we are to the end is not yet clear. Drawing closer for sure, and the road shall be harder still.

Every journey through Alzheimer’s is unique, no two exactly alike, and each precious. That term may seem odd in the realm of Alzheimer’s burden, but it is true. Even in Alzheimer’s the tale remains life’s journey, and life is precious no matter on what pages it be penned. That is difficult to see when tears blind and the hard things hurt, but good things often hide.

Though every journey of Alzheimer’s is its own, a person familiar with making the trek can find remembered landmarks, familiar signposts in events and failures, and even in the emotional currents which eddy through the loved ones slipping away in that disease. So, though in some ways the declines of Grandpa Purdy and Grandpa O’Keefe are much different, in other ways I see familiar failures and the old emotional flailing, like long forgotten friends. Except, those things are no friends.

Grandma O’Keefe had scheduled a family visit down to Virginia to see her son, and her own brother who was also quickly fading to dementia’s ravages. It was a well deserved break for Grandma, and watching Grandpa in her absence was divided among several members of my family. I took the first, and longest, shift, arriving at midday on Friday and staying to about mid-morning on Sunday. I can’t say I was looking forward to the occasion. I knew it would be an adventure, yet with my past experience I wasn’t feeling the same apprehension other members of the family faced over their later shifts. It would be as it would be, and I knew how to ride out any storm.

Jim and Marie on Their WeddingIt has become a pattern for Grandpa that whenever Grandma goes on a trip somewhere he then becomes determined to go somewhere himself. The emotional impetus for this seems to be some combination of feeling hurt that Grandma is leaving him and not taking care of him, and concurrently becoming determined to show the whole world that he is a big man who can do big things. Last time it was going to Syracuse to do big things. That time he found the hidden key to his car and left town in spite of all strenuous discouragement short of physical restraint. He never even made it to the right road for Syracuse. He should have long ago made it to Syracuse and back again by the time we got the call from the police. It was well after dark. Grandpa had created a minor accident all by himself, in a town far from Syracuse. It was time to collect him.

He was unrepentant after that disaster, but it was, at least, enough to get his license officially suspended.

This time, news of Grandma’s trip provoked Grandpa to decide he was moving to New Jersey. It is interesting to note that Syracuse was the most recent place they lived before we moved them to the small town near us, and New Jersey is where they lived previous to that. Grandpa’s choices were progressing back in time. The morning word I received on Friday was that when Grandma left for the airport Grandpa was still not dressed, had not eaten breakfast, and was demanding that he be given the key to his car so he could move to New Jersey. When his request was not granted he vowed that there would be no house left for Grandma when she returned.

So I went to face what would greet me.

When I arrived Grandpa was dressed. Sort of. I think he had the wrong shoes on each foot (maybe not even the same pair), and his suspenders weren’t on correctly. I’m not sure if he managed his pants on front-wise that time. But he had pants and a shirt on, so close enough. When I came inside he was intently going through Grandma’s desk looking for the key to his car. I knew what was up but pretended to be utterly disinterested in his activity and asked him if he was hungry and wanted something to eat.

No, he had not eaten breakfast. But no, he was not hungry. He had eaten a banana. He did not seem irritable in answering my questions, but by his actions it was clear he was still intent on his imagined move to New Jersey. He told me there was some corned beef in the refrigerator which I could slice up for a sandwich. I asked him if he wanted a sandwich and he brushed me off. I finally got the memo that he was hospitably mentioning the food in case I was hungry but he had more important things to do than eat.

So it went. I made myself scarce because I saw that the next thing on Grandpa’s agenda was to get me to help him move to New Jersey, and I had no intention of doing that. Instead, I hid downstairs in the finished basement. The couch and the coffee table down there made an ideal location to set up a laptop and keep myself occupied while Grandpa chased his dreams. Intermittently I went up and asked him if he was hungry and wanted to eat, but he remained adamant that he was not eating–he planned to be out of town before he had another meal. Like a vow of fasting, his course was set.

I was afraid he had found the key to his car so I snuck out and disconnected the car battery. It was doubtful he even had the ability to drive the car like he had months ago, but I wasn’t about to take chances. I found out later that the key had been taken out of the house, but once the battery was disconnected I had nothing to nag my mind about what Grandpa might do. With the car dead there was nothing he could do, though he might not comprehend it.

He tried to rope me into helping him move. His snagged me with a direct request for help loading the car when I came up (once again) to see if he needed any food or drink. I evaded the request by going into his room, taking a quick look, and then leaving. I did it so quickly that to Grandpa’s slow mind it looked as if I had complied with his request (though I said nothing) and when I went past him I escaped back to the basement. That bought me a few more hours without a confrontation.

Because of frost heave in the ground, the door exiting the breezeway from the house was difficult to open. I could open it easily with a firm yank but it stuck enough that Grandpa found it impossible. Thus he spent the day alternately trying to find the key to his car, “packing” in his bedroom, “packing” things in the kitchen, and trying to open the breezeway door. Most of the time was spent futilely on the breezeway door. I checked on him at intervals and he commented on the difficulty of the door. I agreed sympathetically, but since he didn’t explicitly ask for help I played stupid.

By keeping myself mostly absent I had maintained a cordial atmosphere but it was a balancing act. Grandpa was preoccupied with his move and so long as I wasn’t around to antagonize him by refusing to help there was no conflict. I had hoped to let him burn out his ambition alone, but no such luck. Around mid-afternoon he called downstairs to me, asking for help.

“What kind of help, Grandpa?” I asked innocently. “Loading my car,” he said.

“Why would you want to load your car?” I said.

“Because I’m moving. This is a bad neighborhood,” he explained

“Where are you moving to?” I asked. “Where is your signed lease?”

“I’ll get that later. I just need you to help me load the car.”

“Grandpa, you’re not moving anywhere if you don’t have a signed lease,” I said. “You need a signed lease before you can move. I’m not going to help you load the car unless you show me a signed lease,” I finished, trying to keep my voice as bland and reasonable as possible while concurrently conveying an unalterable sense of immovable obstinacy.

It is hard. There is a strong temptation to launch into a rational debate and point out the utter nonsensical and complete stupidity of his actions. He is supposedly moving to “New Jersey” with no fixed location or address and not even the ability to open the front door. What absurdity is this? In the face of such sheer lunacy, the urge wells up like bile in the throat to dress down in detail the long list of the intellectual failures in his supposed plan. Make him see reason, some voice whispers deep within. It’s as if the mental failures scream for rebuttal.

That is a temptation of poison. Such a rebuttal is as pointless as the attempted move, and equally toxic. There is no exchange of ideas here where Alzheimer’s emotion rages in a storm of desperate need. Grandpa’s rationality leaks like water from a rusted bucket, and to address him in the rational frame is addressing him in an unknown language. He lives now in the place of his emotions, longings, and desires. Beyond that, he lives in the past of what was once true about his life. That is what he knows. Facts of the present do not exist here.

I managed to check myself and I kept my objection simple, forsaking all the obvious failures in his plan that I wanted to point out. Instead, I gave him the simple requirement for my help. If he wanted my help, he had to present a signed lease. That simple.

“I’ve been doing this for sixty years,” he blustered, as if that were somehow an answer.

“Then you know you need a lease to move some place,” I said. “Let me know when you get one and then I’ll help you.”

So Grandpa continued on by himself. The object of his desire wasn’t really literally New Jersey. That was a memory, a name for the past, and feelings he once had. Where he wanted to go was back to that glorious time when he was young and healthy. Time moves quickly, and it had escaped from Grandpa. He reached for the dream of when he once ruled his own life with surety, when his steps were firm, his hand steady, and he understood people. Then the world was friendly, the neighborhood good, and life fine. That wasn’t here, that wasn’t now. There were no words of logic to answer his longing, no objection that might still him to peace. He had to hunt for it alone, hunting ever on with the dogged determination that only Alzheimer’s has, the sure memory that since it was before it may still be so again. We see the longing in the mania of insistence, the hope spent in hours trying to open a door without the strength to move, a sadness which needs no words.

I was preparing to start on supper when Grandpa outright asked me to open the breezeway door for him. I hesitated a moment, but decided that refusing his request was an unnecessary denial when he was still permitted outside. I had managed to skirt around a big confrontation so far, and thought it good to keep it that way. So I opened the door. He shuffled outside with his walker and a random, meaningless box he had picked up from the breezeway. While I worked on supper I watched out the window as he walked around his car, opening each door in turn like an uncertain man. He finally stuck the box on a seat and tottered back inside, one car door left hanging open. What I saw was the ghost of a memory that faintly hinted at what moving had once been.

With the breezeway door again shut Grandpa spent the rest of the evening once more trying to get outside. I sat down to eat and when Grandpa came inside on a lull between attempts I suggested he sit down and eat the plate of steak and beans I had set for him. He politely declined and went off (having more interest in the imaginary little girl he thought had been sitting at the table than he had interest in his own food). Darkness set in and still he feebly fought with the door under the illumination of the breezeway light. By 8PM he finally gave up for the night.

Jim is frailConsider how this is a man of eighty-three years who drank nothing all day and ate no more than two bananas to sustain him. In one form or another he had chased his intention to move for some twelve hours, driven by such an obsession that all food and drink was spurned, all idea of rest rejected. I am often amazed at the lengths to which Alzheimer’s will drive people. I think those not trained in handling Alzheimer’s often try to fight this mania, try to bring the sick person back to reason. But I know from long experience that you can’t bring them back–they must find their way, or not, themselves. Like a wild animal caught in a trap they fling themselves against whatever obstacle is in their way with all the feeble frenzy they can manage. I saw it many times in Grandpa Purdy, and that day I saw it in Grandpa O’Keefe. There was no reason, no sense in it. The claws of Alzheimer’s were sunk into his mind, the disease constricting his thoughts like an iron trap, and he had to get out. He had to, beyond all reason. And so he flung himself against the obstacles like a frenzied animal, and like such an animal he would have turned on anyone who would try to stop him. What should have I done? Wrestled him into a chair and forced food down his gullet? Jammed his daily pills in his mouth?

No, the old hand knows the way of these things. It’s a bad spell, but these manias come and go, like an ebbing tide. One must simply hold the stern steady and ride out the swells. This too shall pass, and even so, this too shall pass. They come back less, and less often, but the journey is theirs to make with us here only to meet them, to greet them, and to kindly send them on.

When exhaustion and hunger had worked their toll, Grandpa came in for the night. Like a feral animal he stood by the table and took the cold steak from his plate and held it in his hands, ripping off chunks with his teeth. To stare or look away? It was hard to decide which, seeing in the vividness the grandfather I was losing, and gaining. He refused my offer to heat up the steak, and declined any of the other food. There he leaned like an exhausted man on edge, still ready to bolt away if he could. But there was nowhere to go, and with the steak gone he finally sat, staring rather vacantly ahead. At 9PM I suggested bed, but he refused. By 9:30 I went to bed, and sometime not long after 10PM I heard him go to bed.

Saturday was better. The swell of mania began to recede. He ate his meals, he took his pills, and constrained his attempts at moving to between meals. On his request I opened the breezeway door once for him and he again made the same circuit around his car to place one empty box in the back seat. Inside, the breezeway door again shut, he returned to his futile war. New Jersey was calling, or something like it. Perhaps a siren of the mind.

Early afternoon I checked on him yet again. I found him sitting on the bench beside the door, staring at the floor or maybe the middle distance. Was he thinking about how he might open the door? Perhaps he was thinking about his past glory, now only a memory quickly fading. Maybe. But probably he was thinking about nothing. He had the empty expression of someone simply lost in their not-thoughts.

I asked him if he wanted a drink, and he said no. I asked him if he was hungry, and he said no. I asked him if he wanted a banana, and after some hesitation he conceded he would eat one. So he sat there on the bench in the cold, eating his banana, an old man in the late winter of his life, trapped in the prison of his mind, unable to let himself out. His physical surroundings told the story with poetry I could not improve.

I expect some day Grandpa will want to move again. The strangling hold of Alzheimer’s will seize him again, the desperate desire to be free will come, and he will throw himself against all that holds him back. Maybe next time he will need to return to the Bronx. He was raised there, so always backward in time to the days when all was fresh and clear. When he was a boy of ten he ran the entire grocery store where he worked. He will tell you the story, whether you believe it or not, if you ask him. But you better ask him soon. For of what once was, and now is not, even their shadows are quickly fading. The door is shut, the lights are going out. Soon there will be nobody home. Stop by when you have the chance.

I swapped out duties with my brother on Sunday morning and went home tired, full of memories and a melancholy for which I have no words. What answer is there to the vision of such things, to the scourge of time and deprivations of frailty? Only riddles.

Ah, fear not, the end shall come soon now, swiftly even, when love knows its full measure and all battles cease, though we know not when. Taste the days you’ve been given, savor the air you breathe, and do your deeds well. For each is a gift given, even unto the last, to be treasured as that which we have received, and even so valued. That is the truth, the burden, and the freedom.

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