Through the Windowpane
“For now we see in a mirror, darkly; but then face to face: now I know in part;
but then shall I know fully even as also I was fully known.”
1 Corinthians 13:12
Grandpa is slowly declining. Our family sees the loss and it weighs heavily upon us—upon me, in particular, because he’s my father. I feel his infirmities as if they were my own, and I grieve, although I don’t always recognize it as grieving. It may be a sadness that sweeps over me one day, and sheer exhaustion another, or confusion about what medical changes to make and when, but it always adds up to grieving what Grandpa used to be able to do, and what he cannot do anymore.
For the last three years, I have given him a page-a-day scripture calender so he will always know what day it is. By tearing off the previous page and throwing it away every morning, he can keep track of the date all by himself. Sometimes he just tears the pages off and leaves them sitting on his table near the window, and other times he crumples them up and tosses them in his garbage pail under his desk.
It made me sad to see the beautiful pages of scripture thrown away, so a couple of months ago, I began collecting his castoffs and keeping them in a drawer in my writing desk. If he happened to miss the garbage pail, I would pick up the waded piece of paper, uncrumple it and read the day’s verse for myself. Almost always, it would speak to the situation we were going through together, and the life-giving words would lift my spirit as I went about my daily tasks in his room.
But today, I found the calendar, like a harbinger, sitting untouched on top of his books next to his computer. It spoke volumes of how he is losing track of life as he knows it–and as I know him in it. His days with our family have been defined by numbers on calendar pages and Bible verses, on medicine bottles and clock hands. Day after day, hour after hour, numbers are always marching on ahead, always moving him forward. That may be fine when you are young, but when you are almost 95, it can only mean one thing.
I don’t want to let go of the normalcy of Grandpa’s routine. We’ve been doing the same things, the same way for so long, his inactivity makes me feel empty inside. Soon he won’t be able to give me a “thumbs up to God” anymore for the expectation of the new day. Grandpa is famous for his “thumbs up to God” sign, making sure that anyone who comes to visit, whether friends or medical professionals, know that the reason he is still alive is because God hasn’t called him home yet. I’m almost sure I’ve heard his last request to sit at his computer in the afternoon and write on his current children’s book to his heart’s content. His latest is a story about Yeti the Abdominal Snowman (a Christian version, of course), and it’s really very entertaining. Writing has been Grandpa’s creative outlet, and as he would say, his “magnificent obsession.” I don’t think I’ll hear him say, “That was so good!” about a program he listened to from one of his favorite TV evangelists; Joseph Prince, Charles Stanley, and Pastor David Jeremiah are just a few of his favorites. I think we’ve seen our last days of sitting out on the front porch together and waving to the neighbors as they slow down for the curve that wraps it’s way around our house on the pike. Most people wave to you in Kentucky, even if they don’t know you, and I’m sure for some, seeing Grandpa out on the front porch has become just about as normal as seeing a local historical marker.
That’s why I’m having trouble getting used to the new routine. Suddenly, everything has changed. Grandpa has literally come to a screeching halt. It’s not that he’s in pain, it’s just that he isn’t awake very much anymore. As he withdrawals further and further into a cocoon of sleep, I ache for what used to be, I really do. And yet, I am a little ambivalent, too, even hopeful. I’m beginning to feel a sense of freedom I haven’t felt in a long time. I wonder if I am just beginning to wake up myself?
I’ve been living in a geriatric lala land, cocooning myself away, unable to go anywhere because someone always has to be here with Grandpa. I’m only fifty-eight years old, but the last six years have been overshadowed by the physical needs of a parent who is 37 years my senior. While he sings the lyrics, “You make me feel so young,” I sing a different tune, “You make me feel so old, . . . so very old before my time!”
I want to wake up in the morning and not dread the prognosis of the day. I’m tired of thinking about urinary tract infections, pressure ulcers and congestive heart failure. I want to be fully present for my children instead of fully absorbed by Grandpa’s needs. I want to get up in the middle of the night to use the bathroom without wondering if he’s still alive or passed onto glory in his sleep. I want to sit out on the front porch, enjoying the beauty of nature without thinking about pain and sorrow and bodies that don’t work anymore. I don’t want to think about loss.
Thank, God, taking care of Grandpa over the years hasn’t been all about loss. It has been rewarding and overwhelmingly crazy at times, and challenged our family like nothing else we have experienced. It has shown us what’s in our hearts—the good, the bad, and the ugly, but more importantly it has shown us the face of God, His never-ending compassion, his mercy, and his unexpected grace. And in exchange for our weakness, he has given us his enduring strength, equipping us over and over again for the God-sized task He called us to.
I guess if there is one thing I regret, it’s how many times the “care” side of caregiving has outweighed the “giving” side, and yet, they are inexplicably one. Love is not merely expressed in words, but authentically shown through sacrificial actions that require true grit and perseverance. At least that is what I have learned from taking care of Grandpa.
This day-to-day life of caregiving has been bittersweet and passed by all too quickly. I really don’t know where the time has gone, but I do know I have embraced each day to the fullest, living outside myself and caring for for a little old man who has lived the last years of his life to the fullest while under my roof.
And what I find so mind boggling and hard to comprehend is how I figure into Grandpa’s longevity. Honestly, he should have been dead long ago. And if all his days are written in the Book of Life, how is it that my caregiving is part of that equation? If I just gave up and quit, it would be all over, but I can do no less than what the Lord enables me to do, and most of the time, that is taking too good care of him.
I don’t know how to say goodbye, but I know I must. I surrender the fight! He’s growing frailer every day. I see him fading and there is nothing I can do to stop the dying process. Dying is a part of life, the crossing over from this life to Life Eternal. Surely he and I both welcome that, but I don’t know how to let go, how to transition.
Can you do it for me Lord? Can you just take him, or do I need to stop helping him live? The doctor says there isn’t one thing I can do to hasten the process or slow it down. And there’s something inside of me that is repulsed by making a final decision to speed death on. I don’t want to be the one who makes it. I want you to have the final say, Lord. And so as Grandpa’s life hangs in the balance, as I give him all the comfort I can in his final weeks and hours, I’m learning a little more about longsuffering and your tender mercies, Jesus.
A few weeks ago, Grandpa asked me, “What would I do without you?”
“I don’t know, Grandpa,” I told him . . . but really, I do. He’d be in heaven by now.
And because he wants to go to heaven so badly, I just answer, “I don’t know, Grandpa.”
But, I wonder as I think about his room at the end of the hall standing empty one day, What will I do without you Grandpa? What will I do without you?
I wish I was a lip reader, but I’m failing miserably. “I don’t know what you’re trying to say,” I tell him. “Do you want to write it in the notebook?” The black spiral notebook has become a cherished record of our final conversations together.
He nods his head “yes.”
I hand him the clipboard, notebook, and pen. “Capital letters only!” I say in a loud voice. That’s the only form of his handwriting I can decipher anymore. His beautiful cursive, the kind that was taught to children out of Spencerian penmanship books in the 1920’s is now mostly ineligible.
He scratches his requests across the paper like wild birds taking flight. I’m sure the angle of the bed, and the cataract in his left eye doubles the strokes, turning them to blurs of ink as he pushes them across the page. His words slant upward instead of parallel with the lines. He unabashedly writes like a child. There is no embarrassment, no shame. He doesn’t see the lines anymore.
He’s writing the end of his story outside the lines, in whispers to faint to discern.
When I look at the notebook, I am surprised to see he has written the word “porch.” The porch? Doesn’t he know by now? “Porch sittin’ is for afternoons,” I gently remind him. “When you get up you can work on your book, take another nap in the afternoon, and then sit out on the front porch after that.”
He looks at me, as if in agreement, but I wonder if he has heard me at all. Besides being vocally challenged, Grandpa is profoundly deaf, but it’s nothing that talking real loud in his “good” ear won’t cure.
I know it sounds cruel to make a 94-year-old wait to do anything, but the heaviness in his eyelids betray him. To sit on the porch, just now,would be short-lived, not to mention wearisome for me because of all the maneuvering it takes to get him out there.
It would be one thing if he could walk by himself, but my husband and I have to transfer him from the bed to the wheelchair, and then push him down the hallway to the front door where I slowly lift him over the threshold and out onto the porch. Once there, I put his brakes on, attach the water line to his peg tube, and arrange a cushion under his feet. Then I bring him a very small bowl of ice chips to eat with a spoon.
Sometimes he reads a book, and other times he just sits and looks out over the yard or the field across the road. The local traffic going up and down the pike can be quite entertaining; somebody’s always bound to wave. And, of course, the fresh air makes him drop off for a spell.
After he’s been outside for about an hour, I disconnect his tube, turn him around and hoist him back up over the sill plate and wheel him back to his room. This expenditure of energy just isn’t worth it for an half hour, but sometimes, Grandpa grows impatient, so I’ve come to tell him, wherever he wants to go, he has to stay there for at least one hour so I can take a breather too.
No, it looks as if he needs a nap in bed this morning, instead of falling asleep in his chair on the porch. That can come later.
The oxygen machine next to his bed sucks in air, clicks, and lets out a long hiss. I can’t hear what he is trying to say again over the rhythmic sound. The program on the television is blaring through his headphones in decibels that drown out the little puffs of air behind his words.
I’m at a loss.
So we work around his disability because his mind is still sharp and active. Whatever he needs to communicate: a pen, a spiral notebook fastened to a clipboard, even a keyboard and computer screen, I will put within his reach.
As long as he can form the words, we’ll still be conversing . . . until he converses no more.
As I gaze down the long hallway, the glow of the wooden floor, worn smooth from years of service, reminds me that I am walking on hallowed ground. In the midst of the routine chores that await me in Grandpa’s room, grace-filled moments await me, too. I never know when the next one will fall, like manna from heaven, but I know they will, and I don’t want to forget them.
As I go about my daily tasks, bone-weary from the long journey I’ve been on, I’m well aware that this daughter, turned caregiver, is being carried in her heavenly Father’s comforting arms.
I cannot care for Grandpa in my own strength. I have nothing left to give. I can only do what is required, one day at a time, as God supplies his grace, abundantly. At last, the end is in sight, the burden is beginning to lift.
I have prayed so many times for the Lord to be gentle with us in our final weeks and months together, and I am witnessing the answer to my prayers. I am witnessing the most grace-filled exit to this life one could possibly imagine. There has been more than enough time to help Grandpa cross “The Great Divide” from this life to the next, almost too much if that is possible.
As usual, Grandpa is taking his ol’ sweet time. He is leaving us, ever so gently, and I am slowly letting go of the huge duty we were given six years ago to care for him. But no matter how much I try to prepare myself for what is coming, I ache at the thought of his room standing empty at the end of the hall.
After being bottled up for so long, the tears are finally beginning to freely flow.
It’s been all consuming, straddling two worlds, a world with Grandpa, and a world without him. Since coming home from the hospital several weeks ago due to another battle from a urinary tract infection, I have been trying to strike a balance with his nutritional needs. I wanted Grandpa’s body to give out, to signal when it is through, then I can be through, too. But, he has an amazing constitution! Someone his age rarely survives three urinary tract infections in one year.
Granted, I have figured into the equation for choosing life verses death, modern medical intervention verses subjective comfort measures that lead only to death, sooner than later. But there have been so many circumstances out of my control. Over the last few years, Grandpa has exceeded even my expectations for longevity. Every time I think he is ready to make the final journey from this life of sickness and sorrow to his heavenly abode, he resurrects! His vital signs rebound, and he asks to eat.
Two days after we were home from “our” last hospital stay in June, when he was nearly starved to death, he got up off of his “recuperating bed” and went over to his commuter and started to write again. Some days, he was only able to write a few words, but slowly the pages have gathered as he writes the squeal to the last children’s book he was working on, a book about The Adventures of Yeti, The Abdominal Snowman, no less.
They say one of three conditions will kill you when you are up in years like Grandpa (94 3/4) being urinary tract infections, phenomena, or bed sores. So far, urinary tract infections are at the top of his list. I tell everyone, it won’t be his heart that gives out. The truth is, Grandpa’s whole digestive tract is shutting down, and I can’t get enough nutrition in through his peg tube. His previous doctor told me that nutrition equals healing, but he really isn’t healing anymore, he’s only lingering. His needs have peaked, reaching the highest level of care I can possibly give, and now he is slowly making the descent. Like a mist rising and dissipating in the morning sun, his spirit is reaching for heaven, and his body is signaling it is ready to return to the earth, ashes to ashes, dust to dust.
The time to keep up the good fight is almost over for Grandpa. There is not one thing I can do to make him stay here one minute more. Even through all of my attempts to nourish a body that is reaching it’s earthy expiration date, and my reluctance to relinquish my natural inclination to help him get better, God is still sovereign. Grandpa will make “the grand exit” not one minute sooner or later then God has written down in his book of life, the days allotted to him when there was yet not one.
It’s as if there is a huge invisible clock on his bedroom wall, the clock of eternity ticking away, the big and little hands steadily counting down the exact hours and minutes when his life with us will end, the golden pendulum swinging slower and slower until it ceases moving altogether.
For Grandpa, to live is Christ, to die is gain–all gain, and great reward for a job well done. How he has loved the Lord with all his heart, soul, and might in these, his most fragile years. Even though it has been the hardest thing I have ever experienced, to care for another human being who is so disabled, I would do it again in a heartbeat. He is my father. He is my inspiration.
One day, I will walk into his room, only to find he has forever shed the shackles of earthly limitations, a body succumbed to the ravages of Parkinson’s and old age. Instead of lying in his bed, he will be in heaven, healed and whole, trodding the streets of gold.
I’m envious that he will go on ahead of me.
It’s early, but I’m already running late. I overslept, so my husband got my father up, changed and dressed him, and then wheeled him down to breakfast. Now it’s my turn to take over.
I make my way to the coffee pot and fill a red ceramic cup to the brim with freshly brewed Starbucks. I hope it will jump start my day, but it never seems to make a difference anymore.
“Do we have anything to work with today?” I ask my husband, wondering if “Grandpa” as we affectionately call him is alert or if it’s going to be one of “those” mornings when he sleeps through breakfast.
“He had severe flopposis again,” Robert says referring to Grandpa’s tendency to sleep with his neck unsupported at a 45 degree angle. I usually check on him in the middle of the night to make sure his head and shoulder are cushioned with a pillow, but last night, I forgot. I feel a twinge of guilt, but knowing the many times I’ve repositioned him in the wee hours of the morning, I let it go.
I glance in Grandpa’s direction out of the corner of my eye. The sight of his 94 year old body hunched over the table, catches my breath. As usual, his head is tilted far to the right, but this morning instead of being bright and alert, his eyes are steeled shut against the morning light. His gnarled hands lay lifeless beside his water glass which is placed squarely before him on a cheerful blue and white checkered placemat—a continual, and not so cheerful reminder that he must drink two full cups of water before he can eat . . . But before he can drink, he has to put in his upper dentures which are sitting on a paper napkin next to his plate. And before he can put in his dentures, he has to steady his left hand which is shaking uncontrollably. And so begins Grandpa’s morning ritual, a series of life-sustaining duties which hinge precariously, one upon the other.
It’s a scene I’m all too familiar with as I brace myself for the new day—one that resembles a long string of repetitive yesterdays that have made up the last six years of my life.You’d think I’d be used to it by now, but when I see how frail he is becoming, I hurt for him—and me.
I hate to see Grandpa grow old and lose his faculties, not only for himself, but for us too, and what it will mean for his future care. The more he loses, the more we will have to do for him, and we are already doing so much. You would think the need to hurry would decrease by the time you’re in your nineties, but for Grandpa, it isn’t so. The clock rules his day now—and mine. He used to be able to eat and drink in a reasonable amount of time, but now his meals are long and drawn out affairs from the neurological impairment he suffers.
A couple of years ago, he was diagnosed with silent dysphasia, a degenerative swallowing disorder which is a result of Parkinson’s. When Grandpa swallows, there is a two-second delay, so if he drinks too fast or tilts his head back too far to empty his cup, it goes right into his lungs, usually without any of the normal warning signs you would expect like coughing or choking. His gurgly voice is the only tell-tale sign that he has aspirated, and because of his handicap, it has become increasingly harder for him to accomplish anything on a daily basis, other than eating, drinking, and sleeping. I know he’d rather be writing on one of his many stories, but their just hasn’t been enough time in the day. In the face of such a menacing disability, the hours quickly tick away, the quality of life diminishes.
Suddenly, two weeks ago, Grandpa begins to gurgle like a peculator in the middle of the night. I suction him out to clear the extra fluid out of his lungs before I go back to bed. The next morning, I pull my chair up next to him and proceed to monitor each sip of water by bringing it up to his lips and making sure he places them correctly around the cup, and then I watch and listen carefully to make sure he thoroughly swallows afterward.There is no turning back now. I have to do this seven times a day, but the one bonus for Grandpa is that with my help, he’s finished in half the time. The downside for me is that his care just rose to a whole new level.
Megan, a speech pathologist from Grandpa’s home health agency schedules an appointment to evaluate his swallowing capabilities. After she watches me feed him his water, and sees how difficult it is for him to swallow, she informs us that he could definitely utilize a feeding tube. This is such a relief to hear, and something I hadn’t even considered. His primary care physician said his condition would continue to worsen overtime, but she didn’t even mention the option of a feeding tube. I had just assumed that when the day came, Grandpa would no longer be able to eat or drink, and that it would be a really painful way to have to pass on to glory!
On Megan’s advice, we switch Grandpa’s schedule around to allow more time for his food and water to digest after he eats. Instead of laying him down right away, he has to wait forty-five minutes which is hard on Grandpa because, usually he’s tuckered out after eating and wants to take a nap. But the new schedule will not only allow for his food to digest, it will also give me some breathing room before the next glass of water has to be consumed. I welcome the change as God’s grace in my hour of need. Grandpa isn’t so sure.
“Well, there’s no reason for me to continue to come,” Megan says. “You’re doing everything right.”
I guess I should have been a little less competent because in order for home health to continue seeing you, they have to have a legitimate reason to come. When you no longer need “continuing education” or medical help, the meter on the medicare benefit clock runs out.
“What did the speech pathologist say?” Grandpa asks after she leaves.
I loudly repeat what Megan told me in his “good ear.”
“She said you probably should have a feeding tube because you’re having too much trouble swallowing,”
“I am?” he asks.
His question stuns me! He really doesn’t know he’s having trouble swallowing? Has Grandpa already forgotten all that has transpired over the last week and a half? Or maybe his question is just a nervous response to finding out that he will eventually need to have a feeding tube. I’m sure he would love me to be his personal water girl, indefinitely, but we have to find a solution that makes sense for him and our family. I do have a family to care for, something that never seems to enter Grandpa’s mind, lately.
I begin to realize from recent conversations with Grandpa that he’s becoming less and less aware of his physical disabilities, and what we have do on a daily basis to compensate for his loss. In some odd way, it’s freeing. I don’t know why, but it’s obvious he isn’t grieving over his health issues as much as I am.
It would be nice, however, if he was a little less clingy. We’re starting to wonder if he’s suffering from some sort of caregiver attachment disorder because, if there is such a thing, Grandpa’s got it bad. The other day when I asked him if he liked his new schedule, he replied, “The only thing I don’t like about it is there isn’t enough of you!”
“What are you talking about, Grandpa?” I ask incredulously (insert a deer in the headlights picture here). “I’ve been taking care of you all day long!”
“Oh, yeah, I don’t know what I was thinking,” he apologizes, somewhat embarrassed.
I don’t know what he was thinking either, but his response was totally unexpected, considering this is by far the most time consuming and exhaustive schedule I’ve had to follow yet, and he isn’t aware of how it’s impacting my life, at all? I guess I really don’t want him to, although I know from past experience, when you’re in your 90’s, your heath issues take precedence over everyone else’s needs.
I haven’t been able to leave the house now for a couple of weeks, and there’s nothing we can do to alleviate this stressful turn of events except to get Grandpa a feeding tube. He’ll still be able to eat soft and moist foods by mouth, but most of his liquids will go right into his stomach. I will have to spend a lot of time on YouTube learning all I can about feeding tubes—another learning curve to conquer.
I’m scared to think what this is going to mean to the quality of my life if we don’t make this change. With these new developments, caring for Grandpa has become even more restrictive than it was before. I feel like a caged bird, flapping wildly in fright against the oppressive bars of confinement.
And just as another wave of faith-crippling fear seeks to engulf my heart, I hear a still small voice whisper in my ear, “. . . For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.”
Yes, Lord, Jesus. Thank you, for reminding me. I have given Grandpa ever so many cups of cold water. . . and how many times, while performing the most lowly and humiliating tasks one human being can do for another—let alone a daughter for her father—have I forgotten it is you, I am serving.
Like Grandpa, I wonder how I could forget.
Tears come to my eyes, but they fail to fall. I’m too exhausted to cry.