Grandpa is one tough cookie. You see, we thought he was going down for the count – literally. Early afternoon, the day after he was admitted to the hospital with a urinary tract infection, his blood pressure began to fall. I blubbered to the palliative team doctor, “I see where this is headed!” He put his arm around me and offered premature condolences. As long as he thought Grandpa was dying, he was my best friend.
“Your dad can die right here in the hospital,” he comforted. Only it wasn’t comforting to me at all. All I could think about was how long and far Grandpa and I had come together and how much he wanted to die at home, and now the palliative care doctor was determining a different outcome than what we had hoped for.
Later that afternoon when I walked into Grandpa’s room, his eyes popped open and he said in his best opportunistic, medical-crisis, demanding tone, “When am I going to eat?!?”
One of the Hospice nurses who overheard his question gave me a thumbs up, saying, “Dying people don’t ask for food!” Needless to say, I breathed a sigh of relief. And after learning from the head Hospice nurse that 97% of elderly patients go home to die, I decided to bring Grandpa home, too. Why not? What’s the worst that could happen? Grandpa could either pass away in the comfort of his own home, or live to write another day!
So while a stream of different medical professionals tried to predict if Grandpa was getting ready to expire, he proved them wrong again. Just home six days from a ten day hospital stay where he was nearly starved to death because they couldn’t get a feeding tube down his nose (he has a deviated septum because he shoved a pencil up his nose when he was a kid), he is already eating eggs and potatoes (his all time favorite breakfast foods), and writing on his book at his computer.
I am astounded, but not surprised. Grandpa is in the resurrection business! As long as he’s not in pain, or dying, he’d rather be living.Wouldn’t we all?
Early in the morning, when my defenses are down and my level of consciousness hovers between slumber and wakefulness, I grieve for my father. How much longer will he be with us? Uncertainty churns in the pit of my stomach. It’s the same feeling I experienced when I first learned that “Grandpa,” at the age of 89, would become my family’s sole responsibility. That was over six years ago, and it’s hard to comprehend the end of the journey is in sight.
Is he still alive? I wonder as I walk down the hallway. With trepidation, I open the door and peek in on him. Anyone who cares for an elderly person knows that sinking feeling well – a dance with death. It’s one of the occupational hazards of caregiving, and can’t be avoided.
I can’t tell if he’s breathing from the doorway, but as I walk closer to his bed, I see his chest slowly rise and fall. He’s still here, and I breathe a sigh of relief! As long as he is here, I can kiss his warm forehead and hold his hand. As long as he is here, I can say, “I love you, Dad,” and see him faintly mouth the words, “I love you, too.” And as long as he is here, I can prolong the overwhelming sadness I know I’ll feel when I stand all alone in his room.
My husband and I joke around and ask one another, “How’s the patient in 1A?” “Still here!” is our standard reply. But one day soon, we will have to end the game of charades. It’s only a matter of time before Grandpa passes away, but it seems like he’s been dying for days on end. What’s taking so long, God? I whisper into the poignant air, a rhetorical question, requiring no answer.
Like a circus acrobat grasping the bar of a flying trapeze, my emotions swing wildly between hanging on and letting go. I think I’m ready for Grandpa’s departure, but I know I’m only fooling myself. After being his primary caregiver for so long, how will I transition back to my regularly scheduled life, the one I led before his needs took precedence over mine? The ebb and flow life will surely continue, and yet, I feel caught somewhere between two alternate realities–his and mine. Where does his story end and mine begin? Or is his story now my story, too?
As I walk intimately with Grandpa through the last stages of death, I never know what the day will bring. But I do know the little old man whom I have protected and nursed beyond what I even thought was possible is making the transition from this life to Life Eternal. And even though it hurts my heart to watch him go on ahead, I can’t help but think of what a sacred privilege it has been to have cared for him, not merely with heart-felt sentiment, but through thousands upon thousands of tangible acts of love.
Looking over his daily routine, I calculate that we have transferred Grandpa from bed to wheelchair, and wheelchair to bed at least 13,416 times. We have dressed and undressed him over 4360 times, changed his diapers around 8760 times, and fed him at least 6570 meals. Since he came home from the hospital in June, I have had to turn him twice in the night, every night, for the last three months–a labor of love, and the work of a full-blown nursing staff. Somehow knowing it’s all coming to end, I find the supernatural strength I need to see it through.
I take a pink foam sponge on a stick and slather minty mouth gel all over it. I swish it around his mouth and hope the cool tingly taste brings him comfort. Then I apply lip balm with a cotton swab to his chapped lips, rubbing them gently until they are smooth again. Grandpa’s not able to eat or drink by mouth anymore. Parkinson’s has robbed him of the ability to swallow and talk. A feeding tube supplies all of his medicine and nutrition, but it just isn’t the same, and it isn’t enough. He’s dropped 40 pounds since his hospital stay for a urinary tract infection. He’s a mere shadow of his former self.
Over the last few days, he has become increasingly more agitated in late afternoon or early evening. His doctor tells me it is called Sundowner’s Syndrome, likely caused by a disruption to his internal biological clock. Mostly in a catatonic state during the day, as early evening approaches he begins to fuss and fidget, pulling his covers all over the place. He grimaces as if in pain but if you ask him if he hurts anywhere, he says no. This bizarre behavior goes on for hours and is very unsettling to witness. I observed the same symptoms with my mother before she died, so at least I was prepared mentally for what was to come. Little did I know the Lord was preparing me way ahead of time to know what death looked like and to not to be afraid of it.
I crush an anti-anxiety pill and pump it into his food tube. It will take a while for it to “kick in.” As the restless movements increase, I tell him to relax. A look of peace immediately covers his face as he consciously makes the effort, but in just a few moments, the agitation returns. I sing a worship song and he begins tapping his blanket, keeping time. Suddenly, the tension ceases. He listens and let’s go, and then, over and over again he raises his hands to praise the Lord.
By God’s grace, my husband and I have managed to overcome each new medical obstacle until what has been so confounding has become normal routine. And of course, just when we think we know what we’re doing, the routine changes. How many times has Grandpa’s care morphed in response to a physical ailment he is experiencing, and how many times we have morphed with it. And now he’s morphing again from this life to the next.
When I check on him before I go to bed, Grandpa is awake and resting comfortably. I smile through the semi-darkness, and ever so sweetly he smiles back at me. Suddenly, his eyes begin to dart all over the room as if he is seeing someone or something else, but then his gaze settles on me again. I smile and then he smiles. I lay my head on his chest and he puts his hands around my head and strokes my hair. I begin to cry, there on his chest in the dark . . .
In the morning, Grandpa is still here, but barely. It’s okay, though. More than earthy sustenance, he thirsts for streams of Living Water. Soon he shall have his fill. More than anything, he wants to go home to heaven, and I am envious he’s going on without me, truly, I am.
I’m not afraid to see Grandpa die. He and I welcome it as a miraculous transition from sickness and sorrow to everlasting joy. Soon he will be free. . . and so will I.
I can’t look. One day he’s dying and the next day he resurrects. The only thing is, his body isn’t in full working mode, his fingers are bent at an unnatural angel incompatible with the keyboard. I find it painful to stand there and watch him fumble around, hitting every key except the ones that make up words.
“Grandpa,” I say loudly, “stay on the alphabet keys! Stay away from all of these keys on the right, and use the ones that make up the words!”
He wanted to work on his book, but I wasn’t about to risk getting him out of bed to do it. He’s too fragile, and I’m pretty sure his wheelchair days are over, so I put his monitor and keyboard on top of the hospital table and wheeled it over to the bed. That’s when I realized it was all over. That’s when I knew I had witnessed Grandpa’s last request to work on his book.
Have you ever thought about how many keys there are on a typical computer keyboard have nothing to do with storytelling? Well, he pretty much figured out every stroke it takes to bring up a window that has nothing to do with what he’s working on. I have helped him get back on track several times, but I am not playing technical assistant and nurse maid to a dying author of any acclaim. Even if he was famous, it would be of no use, he can’t type.
I am totally miffed. How many people at the age of 95 are asking to go on their computers, anyway, especially when they are on their death beds? Even dying isn’t sacred anymore . . . or maybe is is. He wanted to do what he loved the most, up to the last minute.
This morning I had another one of those talks of release with Grandpa.
“Are you going on ahead of me?” I asked him.
He smiled a big denture-less smile.
“You bugger,” I said.
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?
Another day dawns, and Grandpa is still with us.
It’s early in the morning. The rising sun illuminates a dense fog that blankets the surrounding fields, outlining the boundaries of pasture fences and hedgerows in a golden glow. I’m tired from taking care of him through the night watches, but I don’t want to go back to bed, not just yet.
It’s so quiet. I sit down to write – my one solace – the unburdening of my soul.
This morning I feel like my mind is in a dense fog, with little illumination. For the last three weeks, I have been turning Grandpa three times in the middle of the night. Last night between 12:00 midnight and 6:00 o’clock a.m., I actually turned him four times. I’ve never had to do that before because he sleeps on an low air loss mattress that alternates the air pressure under his body, bringing relief to the pressure ulcer he has on his bum (didn’t know we were English, did you?), but Grandpa is having a harder time clearing his lungs since coming home from the hospital in June, so turning him from side to side helps to break up the mucus.
To add insult to injury, I caught a summer cold at my granddaughter’s 1st birthday party last week, then passed it on to Grandpa. So just as his lungs cleared from all the stress his body has been through in the last few months, he’s back to coughing up flem and having to be suctioned out. If it weren’t for the suction machine, I’m sure Grandpa would have expired along time ago.
I’ve also begun slathering Vick’s Vapor Rub all over his feet again and putting his socks on over it (an old home remedy that really works). My son ordered some Dottera essential oils, Breathe and Cardamon, which I rub all over his chest. The soothing aroma makes me feel like I am anointing the feet of Jesus with a costly perfume. Maybe I am.
Getting up throughout the night isn’t as bad as it could be. I usually wake up around 3:00 a.m. to use the bathroom anyway, my post menopausal body being the best alarm clock there is. I always turn the hallway light on and peek in on Grandpa to make sure he’s alright. Of course, he is in the exact same position I left him. He can’t roll from side to side, partly because of the pillows I have stuffed under each elbow, but Grandpa hasn’t turned on his own for years, the air mattress and pump doing all movement for his blood to keep circulating.
As he declines, however, I see the core strength he used to have diminishing. The stiffness in his upper body seems paralyzing. I remembered what one of his previous doctors with MD2U told me: turning clears the lungs. So I’ve been turning Grandpa and it’s really kept him from getting phenomenon.
Both he and I run on the Lord’s strength. There is no other explanation as to why he is still here, and why I am still able to care for him like this in his final days. I’m really sad, though. It’s not because of what I have to do, but because of what I may not be doing much longer – taking care of Grandpa.
The doctor told me yesterday, I’m so close to the situation, I can’t really see Grandpa declining, but I don’t think that’s entirely true. On the other hand, maybe she’s right. Maybe it’s just wishful thinking on my part to think that he can pull through another urinary tract infection.
In the meantime, I will continue to turn, turn, turn . . .