≡ Menu

Sunday morning, three weeks ago, I was trying to sleep in. I am never good at staying in bed long after the sun has risen, but that morning any attempt was cut short at seven thirty by the insistent ringing of the phone. While rare is the occasion I manage to sleep much past eight, rarer still an early Sunday morning phone call. With Grandpa in poor health there is an easy place for thoughts to leap when the phone rings at a strange hour. By the sixth ring I was scrambling out of bed and hurriedly dressing. Mom reached the phone in the hall first.

“Yeah. Here he is.” She handed the phone to me. Grandma was on the line.

“Sorry to call so early, but I just found Grandpa on his bedroom floor,” Grandma said. “I can’t get him up.”

Time to rescue an old man from himself.

Exactly how long Grandpa was on the floor we will never know—he wasn’t able to explain. And, though the worst he physically suffered from the fall was a small scrap on his back, the event heralded the beginning of a new reality. Everyone who had seen Grandpa in the several weeks prior to that fall could tell he was declining rapidly, his strength failing. Now his weakness had reached a critical point. In the ebbing of his strength the ability to walk now deserted him. Two months ago he wanted to get out to the car and move back to his past. Now he required help to simply move out of bed.

I had seen this change coming far in advance, but for a moment it seemed even more precipitous than I expected. I easily moved him from the floor but the day did not improve for him. By Sunday evening I was called back down to help Grandpa back into bed. He was exhausted, but refusing any help. When he reached the utter end of his rope I finally convinced him to lay down and there he collapsed within himself. He stared at the ceiling with a fixed gaze of half-open eyes, his mouth hanging slack, his breathing shallow. In that moment he looked so ravaged, so wasted, that he seemed the picture of death. In that second I wondered if he had slipped away under my hands, in the follow minutes I considered how few days he might have left. So I went home and wrote an email to the extended family, the “If you want to see Grandpa alive one last time you should come now” email.

I had not expected the end to rush that quickly.

As things turned out the end did not come so fast as that exhausted Sunday evening made it seem. What I saw then was only a glimpse of what we were drawing near, not the final rush. Following a span of not eating, and not drinking, Grandpa rallied over the course of several days to again drink in moderation, and eat in scant measure. One meal a day is not the man he once was, but he has a little time yet. We are not counting down the days of the last week, but this is the final stage, the last act. When this is over, it is the curtain call.

Grandpa’s independence—before failing—has vanished entirely. Both Grandma and Grandpa are struggling to adjust to the new reality. Grandpa can’t get himself out of bed, and Grandma discovers she can’t either. Somebody else must stand in the gap.

When everything came crashing down, figuratively and literally, at the beginning of May I stepped in. I made the fifteen minute drive twice a day to change Grandpa and get him out of bed, and then change him again and put him back into bed. It was a manageable—if far from ideal—situation, but with one catch: When June arrives I will begin book touring and then I am no longer available for every need.

It has been nearly a year since Grandma Purdy died, and so for that span I put off the mantel of caregiver and live a life by my own schedule and for my goals. But I find it easy to slip back to the old habits of tending a person whose body is failing. The strange contradiction of an unhappy but comfortable familiarity.

Grandpa hates being weak and needy, and with every fiber of his being he tries to deny it. If he can’t do something it is the fault of something else—or someone else. And so Grandpa needs me, and dreads me.

The familiar contradictions. A surge of thoughts and feelings come back and I can’t really set them in order. They are like the debris left by a flood—jumbled, confused, familiar and yet beyond sorting out. The tempo and rhythm and friction is so familiar–and with it a deep weary thought which ponders how approaching death is one of the most familiar things to me.

How do I walk in this place where death is near and grasping at all? I never have an answer to the question. I walk and I do and where the knowledge for apt deeds and the doing comes from I can’t really explain.

I wrestle with feeling guilty. That damp festering settles around dying, in many shapes and sizes. The more abstract guilt is found in considering how I’ve carried this load before, and the feeling that I should carry it again—lift it away from Grandma’s shoulders, relieve everyone else, and do what I have done before. I can do this. I have walked this road before. The scourge and the weight are long familiar to me, and when I leave Grandpa mostly in Grandma’s care I have the gnawing feeling that I haven’t done all I should. I could put off my book tour. I could handle the situation.

I must wrestle through it, remind myself that this one is not mine to carry. It is not my place to carry every load, or hold the vigil at every bedside. There is a privilege in walking these hard roads, but Grandpa has not asked me and does not want me, and it is not my place to usurp what Grandma would carry in her own way.

Then there are the earthy moments of guilt when I must wrestle with the practical aspects of day-to-day care. Guilt that Grandpa was in a dirty diaper to long, and I should have done something about it. Guilt because Grandpa doesn’t want his diaper changed and I do it anyway. Guilt that he hurts when I change him and move him and somehow it hurts and he blames me for it.

If death were neat it would be a little easier, but the hardest things of dying are when it gets ugly. Grandpa is falling slowly, falling through the days and hours to a final jarring impact with the ground–but he thinks he can catch himself, and he vehemently wants no one to catch him. When to abide his unreasoned wishes, and when to hold him even though he curse you for it? The seems, there feels, a horrible tension in what love is when someone asks you please to not do something and you must decide whether you will honor that request or not. In the light of a nice day the answer to that might seem easy, but what about when it’s “Please don’t change me. Oh, please don’t move me?” and what the means is leaving them in a reeking urine soaked bed? It is easy to say love is giving people what the need, not what they want. It is another thing to have your grandfather curse you for it.

How does love it manifests itself in such a slow unfurling disaster? You cannot make someone chose life and so in all of the moments I must harden myself to the curses and do what must be done still I must also remain sensitive to the fact that the time will come when there is nothing to do but step back and let go. This is where the hardest part of life resides—where to do what is not wanted, and when to let go of what is wanted. I cannot make him eat, or drink. I cannot make him decide to live. In so many ways, and so many things, the tension of that plays out in the stumbling moments of each day. Sometimes I don’t do the things to him which are best for him, but he vehemently doesn’t want because I don’t muster myself to fight those battles. And there is the temptation to fight him to chose life when the time of his death has come. It is his life, and his death, and in some measure that means giving him the passing he would chose. But as his mind deserts him it also means sometime stripping the reeking diaper off him, and changing the sheets, no matter the opinion, the begging, or the curses.

Always in all of is the reminder (if we would consider) that life, and love, does not have the neat and clear we want. If only love always did look beautiful and gain us thanks then the path would seem straight. But sometimes love is the reek of ammonia so strong it chokes in your throat, and the sound of an old man cursing you for what you do and dreading your appearance. Such times remind me again again that life is hard, and will be harder still. In such places it seems an intolerable thing that love so often hides behind scorned service, and the greatest sacrifices are often the most reviled.

That is the mystery, and the path we must walk in this life. So I be patient as best I can, bear his dogged insistence and accusation with as much grace as I can, and remember that here in this life of dying is all of the strange paradox of what living and loving truly means.

{ 1 comment }

You know you have grown up, when you are talking to library directors. It also means you might just be an author preparing to go on tour. If you spend too much time thinking about it, the whole situation might start to become intimidating.

At least it is that way for me.

I remember as a kid that the librarians were always very intimidating. They were the figures of authority, the ones behind the desk who frowned on noise and the abuse of books (two things as a kid I was always in danger of infringing upon). So, librarians were way up there. Tremble to approach, or something like that.

For an introverted, shy, kid like me it was an act of great bravery to finally go up and get my first very own library card. I practiced signing for it in advance.

All of this to say that I was reflecting this week that I have certainly come a distance in my life that now I am calling up librarians. Even more, when I talk to them they say, “Oh, you’ll need to talk to the Director about that. Let me see if I can find the Director, or transfer you.”

So now I am talking to library directors, emailing library directors, and answering library directors questions about my qualifications to speak at their libraries. And I am convincing these library directors that I am qualified to speak at their libraries, and getting them to schedule dates for me to speak at their libraries.

Some days I feel like I’ve never grown up, and never will. But I guess if we have to draw a line somewhere and say crossing it means you are grown up, I suppose “Convincing a library director to let you speak at their library” counts as that line. At least for this boy who was scared to even talk to a normal librarian.

Touring events for my book are starting to come together. Below are the first I have dates solidified on, and more are in the works so stay tuned. Some future ones might be in your area!

{ 0 comments }

I decided to do something a little different and create a video journal of some outdoor stuff I am working on. It was the sort of thing I wanted captured for my own historical record, and it was quicker to capture the stuff in video rather than trying to write out a blog post explaining it all.

{ 2 comments }

I know the blogging cycles. There are the dry spells, and the times of plentiful writing. Each comes in turn, and I don’t worry about it as I might have years ago. If for a time I write little, more words will come when they are ready—and not before. There are seasons in my writing. I have times when I write longer posts, and then times when the writing is short. There were periods in the past when my posts leaned more toward a style of daily journaling, then other times I mostly wrote thoughtful essays. The key to mature blogging is not worry about the change in seasons but to recognize when one is ending and another beginning. Trying to stay in your past writing is the surest way to choke out the writing you now have.

I realized I needed to remind myself of this.

Long form, thoughtful, serious writing is what I value most. And, sometimes, that is what I need to write. When my time with Grandma ended that kind of writing is what I needed. After what I saw and experience, I had no other words. Lightness and laughter felt like a mockery at that time.

So I went with the tide. I cleared the the blog, cleaned everything down to the barest bone, and wrote hard thoughts. It was good for me. The blog change itself said something, and it drew out things that needed saying. I am very glad I have written the thoughtful, sometimes beautiful, occasionally poignant posts that came in that time. That was the needed season of processing after a hard journey.

I will never be completely done processing that time any more than I am ever done processing life. But I sense I am moving on to a new season where that reflecting is no longer a preoccupation. Slowly, I find I am moving forward.

Hard times, and death, makes everything feel serious and provokes serious writing. Death is serious, and serious writing is good. But dwelling on that too long, obsessing on that, can make one forget that God invented laughter, too. There is time for somberness aplenty, but with the coming of spring (and perhaps the passing of enough months since those black times) I have begun to feel the stirring of lighter things.

Crafting thoughtful writing takes significant time, and mental energy. I like the results very much, but in the best of times that genre of writing limits my output. If I have other obligations taking priority on my writing energy (as I do now) I rarely have the wherewithal to sit down and write a thoughtful blog post in the evening. Thus at present such writing has come like a slow drip from a faucet. It isn’t that I have little to say, it is that I have only so much writing stamina in one day. When serious writing is all I hanker to create I reconcile myself to that slow output—and for a number of months that was all I wanted to write. But recently I’ve felt the urge to write lighter things, and savor the small (seemingly trivial) of life.

I hesitated because I have a lot of serious thoughts still in my head which I haven’t written down, and so anything lighter has been shoved aside because I must complete the important writing. Then I realized the desire to set aside the serious (just for a bit) is not something I should fight. There are seasons, and there is a balance. I shouldn’t box myself in.

It is time for some balance. I will never leave the serious writing, there will be plenty more of that. Anyone who knows me knows it is part of who I am. But dwelling only in somberness is like trying to keep myself in one season of my life. It is a time to move out of the deep shadows and walk in a place where shadow and light, serious and minor, each have a place. I could spend the rest of my life writing about suffering and death, but it is not wrong to stop sometimes and write about how funny the chickens were today.

It is time to give myself permission to let go, to look forward as much as back, outward as much as inward, and feel again a bit of the beauty that is found in living, breathing, and doing.

{ 2 comments }

When the clock ticked over from Friday night to 12:01 AM Monday, my Pubslush crowd-funding campaign came to an end. If you were watching the website then you know the final numbers at Pubslush were 40 contributors, and a total of $4,820. However, if we are being completely precise an additional four people wanted to contribute off-line via physical check, which added an additional $280. So the real total, which wasn’t on Pubslush, was $5,100.

When I was first contemplating the idea of doing crowd funding I struggled to imagine ever raising $5,000, and here we are! It has been a journey of thankfulness and humbleness.

This has been a great success, but I set a goal of $13,000 which has lead some people to ask what I am going to do since I didn’t reach that amount. First, since I didn’t use the Kickstarter website (which has a policy of all or nothing funding), I keep the money I raised even thought it didn’t reach my ultimate goal. That $13,000 goal would have provided me with funds to effectively reach the most people possible, but $5,000 enables me to reach more people than if I had raised none. So $5,000 is a much more modest start than charging out the gate with $13,000 to fund my efforts, but that $5,000 will enable me to reach many more people than I otherwise would have been able so from that perspective it is a huge success. Coming short of $13,000 does put some limitations on me, but this is all anything but a failure!

Many of you reading this were contributors to the effort. I admit it was hard for me to feel like I had adequately expressed my thanks to everyone–even with the email thank you I sent, and the rewards sent and yet to be sent. So I am saying thank you again to everyone who got behind me and lent their support to this journey. Your vote of confidence means a lot.

I think the greatest tangible sign of thankfulness you could all receive would be to see the gratefulness on the faces of those who will be comforted and encouraged by my book. That will be the result of what you have all done in supporting me, and so that is what I want to give you all for joining in. Unfortunately, most of you won’t be there when people receive and read my book.

But perhaps you can imagine it.

{ 0 comments }

As I write this there are thirteen hours left in the crowd funding campaign for my book. If you intended to take part, now is your last chance. If you haven’t check it out yet, why not do that now: https://pubslush.com/project/5270

Additionally, here is a video I shot with me reading an excerpt from the book.

I have a lot of learning to do in the art of making videos, and audio presentations. On the one hand it is fun (I like learning, particularly artistic things) but on the other hand it is frustrating and humiliating in measure. I learn from doing, and critiquing myself, and from the comments I get from other people. Hopefully I will continue to get better.

{ 0 comments }

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. In some measures that is a long time, but when in this past week I found myself again visiting the court where Alzheimer's holds its 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 hard to see when tears blind and the hard things hurt, but good things are often hard to see.

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 Virgina 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.

It 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 off 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 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. 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."

"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. 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 said, 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, and 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 (having more interest in the imaginary little girl he thought had been sitting in a chair than he had interest in his food) and went off. 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.

Consider 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 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 New Jersey 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 meaningless 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, 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 what once was, and now is not, even their shadows quickly fade. 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.

______

Have you enjoyed my writing on this blog? Has my writing on the struggles of caregiving and Alzheimer’s touched you? Do you want my writing to reach more people, to help and encourage them? Perhaps this post has reminded you, as what I experience has reminded me, how much those facing Alzheimer’s need support and encouragement. I have written a book about my first experience with Alzheimer’s and I am currently running a crowd-funding campaign with a goal of reaching as many people facing Alzheimer’s as possible. Would you take just a moment to look at that campaign and consider offering your support? Thank you, I appreciate it.

{ 2 comments }

So, long time readers, in case you haven’t figured it out, my book has been taking up a lot of my writing time. Finally, after a very long time, we are on to the next step. And so I bring you this. The cover is finished, the book is ready. Now I need your support. I’m looking for your help getting this book out to people facing Alzheimer’s. I want to bring them support and encouragement, but I can’t do it alone. If you are long time followers and know who I am and what I am doing, please consider supporting. Even just $10 would be a big help. For those who haven’t been long term followers, I’ll give it to you from the top.

The Short Story

When Rundy was twenty-four years old he began caring for his grandfather who was dying from Alzheimer’s. Grandfather and grandson took a three year journey together to Alzheimer’s end. This book is the story of that journey.

With compassion, hope, and a strong dose of gritty realism, The Sea is Wide tells the story of how the wide sea of Alzheimer’s was crossed. In writing that is by turns uplifting and poignant, Rundy shares his journey of perseverance and love.

Photo Credit: Philip Maslin
Grandma and Grandpa

The Purpose of This Book

Alzheimer’s is a scary disease. People who are facing Alzheimer’s, whether in themselves or in a loved one, face many fears and questions. This book will be an encouragement and support to those people. I am sharing my story to pull back the curtain and shine a light into the dark corners of the Alzheimer’s journey.

There are hard parts and sad parts in the long road of Alzheimer’s, but there is also a place for love and hope. This book is so that nobody has to face Alzheimer’s alone.

Why I Need Your Support

Front Cover

It has taken me several years to write and refine the manuscript. After multiple revisions and many edits, the story is now complete and ready for publication. I had a professional-quality cover designed and carefully polished with extensive feedback. The complete book package is ready to print.

This is a timely book. The number of people affected by Alzheimer’s is increasing rapidly. According to the Alzheimer’s Association, every 67 seconds someone in the United States develops Alzheimer’s and today it is the sixth leading cause of death. One in three seniors dies with Alzheimer’s or another form of dementia. An estimated 5.2 million Americans of all ages had Alzheimer’s disease in 2013. By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 7.1 million—a 40 percent increase from those currently affected. By 2050, Alzheimer’s disease may nearly triple. Nearly everyone will be touched by Alzheimer’s at some time in their life—whether it is grandparent, parent, relative, friend, neighbor, or coworker. We all need to better understand how to face this disease, and help others deal with it.

I am excited by the possibility of reaching those people. My experience with caregiving has convinced me that people need this story of hope, encouragement, and perseverance. I want to give people help and encouragement through this book. I want to go out and personally help them by sharing the lessons learned from my experience. But that is a big audience to reach, and I need your help.

How you can help:

(1) Spread the word. Tell your family, friends, neighbors, and coworkers about this book. The more people who hear about this book (and can tell others) the more people will be helped in their struggle with Alzheimer’s.

(2) Give a monetary donation to this campaign. It costs a significant amount of money to get a book published and to the people who need to discover it. Here’s a partial list of expenses:

  •     Cost of setting up the title (ISBN, setup fees, etc)
  •     Cost of printing the books
  •     Cost of shipping the books
  •     Expense of advertising
  •     Expense of setting up a website
  •     Travel expenses incurred going to speaking events to share the book

Even a contribution of $10 can bring this book to people and revolutionize their approach to Alzheimer’s and caregiving. Together, we can bring a new perspective to Alzheimer’s.

Your generosity and support are greatly appreciated.

What People are Saying

It is a must-read for those taking care of loved ones suffering from Alzheimer’s and for those in the medical and nursing profession. I will definitely recommend this book to my patients and nursing students.” – Louise O’Keefe, PhD, CRNP.

I highly recommend this book.” – Wilmer Estevez, RN

An honest look at what daily care looks like through the eyes of a loving care-giver. I laughed, I cried, but most of all, I observed how it is possible to care for a loved one through the very bad days that are inevitable while also being grateful for every respite. […] I want to thank you for showing me that beyond all the heartache this can be a journey of love and dignity.” – Cynthia Phillips, Caregiver

A real insight into the depth, love and reality of a caregiver and a victim of Alzheimer’s.” – Debbie Rombach, RN

I laughed and cried my way through […] it echoed things I went through with my mother and her dementia.” – Alice Janick, Caregiver

The Sea is Wide gives healthcare professionals an inside look at the struggles that families of those effected by Alzheimer’s face on a daily basis” – Nicole Wayman, LPN

Author Photo
Thank you for caring–Rundy

Interview with Rundy Purdy

Why did you write the book?

I wrote The Sea is Wide to share my experience, and my grandfather’s experience, facing Alzheimer’s. My goal is to educate and encourage those facing Alzheimer’s, and provide them with hope and support.

What was your inspiration for the book?

Life inspired this book. In a sense, life wrote this book. What I experienced in three years of caring for my grandfather powerfully affected me and deeply changed me.

Also, I wrote a journal/blog while caring for my grandfather and that formed the rough base material for what would become The Sea is Wide.

What would you say to someone facing Alzheimer’s?

The journey you face is hard, but it is not meaningless. Alzheimer’s can take many things from you (or your loved one) but it does not take away worth. Most importantly, Alzheimer’s cannot touch love. Love laughs in the face of Alzheimer’s because it knows in the end it cannot be destroyed or beaten.

And finally, you don’t have to take this journey alone.

What do you plan to do with the funds you raise?

The purpose of the funds we raise is to reach as many people as we can with my story–and so encourage and support as many people as possible. A big part of the funds will be used to print and ship the books, and then also for travel expenses to go to venues and speaking engagements to share my book, my experience, and my story.

To donate, please go here. Thank you so much!

{ 0 comments }
Night frozen window

This is always a difficult time of the year for me. The really hard part of winter begins in December, when the days are darkest. This hard stretch continues to worsen as January lengthens, but the bleakness reaches it nadir in February. You can find me here every year, when all seems most desolate and everything appears to spread as empty meaninglessness far as the eye can see.

Every year is hard, the very hardest in February. But some Februaries are worse than others. I don't know if it has something to do with how much sickness a particular winter has, or how much snow and cold, or if it is tied more to things in my own life. Whatever the reason, this seems like a harder February than many in recent years.

I think I am struggling with depression, probably of the seasonal sort. For a number of weeks now I haven't had any interest in playing computer games. At first I thought this a stroke of good fortune--with no interest in game playing there was one less distraction from work, one less temptation from productivity. Then I realized my lack of interest in game playing didn't come from me being eagerly caught up in activities. Rather, the lack of interest sprang from apathy. That is never a good thing.

Game playing could not interest me because I couldn't find much motivation or meaning to do anything. Yes, I was plugging away at getting the minimum done at my daily obligations--but once that was finished apathy swallowed me. At the end of the day even having fun felt like too much work, pointless, and why bother?

I lost motivation for blog post writing. I'm trying to get that back. I have a bunch waiting to be written, but all eagerness has deserted me. I struggle to apply myself to most reading. (I have managed a bit of novel reading.) On top of all this I find no real excitement in my book project. My book about Grandpa is nearing completion in exciting ways and yet it just feels more like a grind and a duty than the exciting and interesting beginning of the next adventure in my life. This is great, this is amazing, this is what I have been striving toward for years. And yet, what I feel is "Meh."

I don't want to feel "meh." I would like to feel the true goodness and light of that which is starting, that which is beginning to unfold and I can partake in. I want to apprehend that, to rejoice in that which God is giving me.

Instead, I feel a crankiness and a gloom. I feel irritable and short of patience with people. I don't want to be around them even as I also feel some need to be around them to escape the darkness and closing coldness. I want the world to go away. There is a feeling of being pressed down upon. I feel like I want to sleep, but I don't want to go to bed. I want to hide away in some hole, and yet I feel trapped indoors. I want to get out. I want lights turned on, very bright everywhere.

Everything seems cold.

I long for bright sunshine, blue skies, and a warm wide world which welcomes me to do things. Yes, I long for that not just around me, but springing up inside me, too. I hope it is just the time of year, the weather, which brings this brew of bleakness. By February all my energy for dealing with winter is spent. I know that. And if that is all that it is, then when mid-March comes with its bright sunshine, melting snow, and warmer weather--then this cloud with dissipate. But if it is something more, this may be a longer battle.

Spring will come soon enough into the world around me. February has reached its end and March is coming. May spring also come within me. May joy and gladness come, and eagerness and vigor in labor--even a heart revived. May I know freedom from gloom and the hope of real fellowship in the midst of toil.

We are not meant to live all of life in winter.

Morning frozen window
{ 5 comments }

The time has arrived. After much work (big thanks to my talented brother Justin who designed the covers and many more) and much agonizing, I must now decide what cover will go with my book The Sea is Wide: A Memoir of Caregiving. It will be a tough choice. In the end I must weigh the pros and cons of each possible cover and make the final decision myself. But feedback can help that decision making process, so I’m here to ask you all for your thoughts. I have posted a selection of the five top covers. Take a look, give your vote, and maybe even leave a comment!

Thanks for participating!

{ 0 comments }
%d bloggers like this: