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 feeding 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.
My days consist of milliliters – milliliters on feeding tube bags, milliliters on syringes, milliliters on catheter bags. My father, who is no longer able to drink liquids due to Parkinson’s is now on tube feeding for most of his nourishment. Grandpa loves to eat, as do most of us, but he is only able to eat one meal, a day, by mouth. He does so with the risk of aspirating, but at this point in time, he loves food too much to give up on it altogether, so the bulk of his nutrition is dispensed by formula at an hourly rate, right into his tummy.
After a year and half of struggling to consume enough food and water to meet his nutritional needs, the feeding tube has actually improved his quality of life. At the age of 94 and three quarters (his 95th birthday is in September), he still loves to write fictional stories for children. He would rather spend the limited energy he has on something fun, like writing, rather than be stuck at the dinner table for hours, trying to swallow food and water, which have become his arch-nemesis.
On the other hand, my life as his daughter, and full-time caregiver has become more complicated. You would think with all the time we wasted trying to get an adequate amount of food and water into him over the last year and a half, a feeding tube would be a welcome change. In someways, it is, especially when it comes to medicine, but as far as getting enough calories into him to prevent weight loss, it is nearly impossible.The truth is, even though Grandpa’s mind says “Go, go, go!” his body is increasingly saying “No, no, no!” There is only so much his aged body can absorb anymore, and Grandpa’s innards are just plum tuckered out! Well, almost. He is working off of reserves, and when he has used all of them up, that will be it!
For the most part, he has adapted gracefully to the changes in his life, but he and I are learning the hard way, man cannot live on bread alone.
This morning, as I sat on the front porch of our home in the country with the red tin roof, I was struck with the awareness of the peace and sheer joy that awaits me there, everyday, right outside my front door. Inside the house, I am a full-time caregiver to my elderly father, a wife, and a mother – a woman of many responsibilities – but out on the porch I am a child of God who only wants to listen to the symphony of bird chattering, and feel the soft summer breeze caressing her cheek. I just want to be still and breathe deeply.
We all need a quiet place to refuel and tap into our creativity. For me, it’s the front porch that overlooks the flowerbeds, and the yard and the fields beyond the road. There’s something sacred about the atmosphere that makes me more alert and receptive to hearing the Inner Voice who sparks my creativity.
Porch sitting refreshes and nourishes my spirit. It invites me to slow down and contemplate life. I love to read my Bible there. Without time in the Word, instead of experiencing flowing waters, I find myself scrounging around for rocks of inspiration in parched riverbeds, run dry through a drought of my own making.
It makes me sad to think of how many mornings I’ve had to forgo the Lord’s invitation to find rest as I jump into the duties of the new day. I often wake up too late, and punch the imaginary time clock that rules my life, marching to the ticktock of the never-ceasing minute hand. Caregiving is exhausting, and all consuming, but I wouldn’t trade what I am learning about life for anything.
There have been other seasons of life when it was easier for me to freely write and draw, but for the last six years, I have been “creatively challenged.” Inspiration is hard to come by when you can’t quiet your soul. Most days are lived in a state of urgency, caring for my elderly father who is in the last stages of Parkinson’s. My life revolves around urinary tract infections and the possibility of my father contracting pneumonia.
One thing I know, if there is anything that will rob you of creativity, it’s stressful, life-draining cares and responsibilities that stretch out far across the horizon with no end in sight. Sometimes it feels like my creativity is all bottled up inside, and I’m afraid to uncork it, to express myself because of the effort it will take to put marks on the page. I don’t even know where my art supplies are anymore.I used to keep them in a basket so they would be all in one place, but I think I lent them to my youngest.
I am often challenged by my kids to draw, but I don’t want to invest the time and energy it takes to do it. Somewhere, buried deep inside, the creative spark lies waiting, but I fail to search it out and kindle the flame because I am too weary to trust that the process is reward enough in itself. And so, I allow distractions to pull me away as I gravitate toward the path of least resistance.
We creative types process life intuitively through our senses to ultimately make sense of our lives, so whether it is pain or sheer exhaustion that robs us of the ability to feel, we may find ourselves muddling through the muck and mire of everyday routine where only our darkest thoughts collect – a depressive existence at best, and a place where the air is heavy and suffocating.
Creating takes a certain amount of vulnerability and being willing to get in touch with our innermost emotions, especially during times of stress and weariness.When we eventually commit our thoughts and perceptions to the blank page, we find the process of capturing and retelling our story, therapeutic and healing. And that might be the very thing that will get us though a hard time.
Next time you find your self resisting the urge to create, seek out a place of solitude and beauty. Listen to what the Holy Spirit is saying to you. Be at least willing to get your story out, to write it down, to feel the creative tension, and look for the analogies the Lord drops into your spirit.
Just sit and take in the world around you until you can hold it no more and it has to spill out onto the pages of your journal. Find a place where you can be still and breathe deeply.
We’re waiting for Grandpa’s breakfast to be delivered to his room again. The first tray that came up from the shadowy depths of the hospital bowels included a bowl of burnt grits.
As I lifted the lid off of the little black plastic bowl, a tell-tale smell caught my attention.
“Smells burnt,” I said to myself.
I mixed it with a little yogurt and gave it a try.
Ugh! Even Yoplait yogurt couldn’t disguise that nasty taste.
I called down to the kind folks in food service who are always willing to please, and ordered a bowl of oatmeal instead. I mentioned that if they happened to make a big pot of grits, they might want to check to see if it was burnt on the bottom (just sayin’). Sure enough, they informed me, it was.
So while we were waiting, I decided to settle into the comfy recliner in Grandpa’s room and write down a few thoughts that came to me this morning on the topic of “Consider Your Ways” from the book of Haggai.
Suddenly Grandpa starts singing!
It never fails, the minute – yes, the minute I try to write anything, Grandpa distracts me somehow, someway! It doesn’t matter whether we’re home or in the hospital, it happens all the time.
Frankly, after five years, I’m “sort of” used to it – okay, I’ve resigned myself to it, I’m not happy about it, but I am used to it.
And what is he singing you ask? Oldies and goodies. But, I don’t mean oldies from the 1950’s, I mean “real oldies,” like the ones from the 1920’s and 30’s:
“I am going to sit down and write a letter and make believe it came from you . . . ” he croons.
And then, not skipping a beat, he changes his tune:
“You must have been a beautiful baby, you must have been a beautiful child . . .”
I’m starting to lose my “chain of thought,” my “imp” in impetus, my motivation, my incentive, my inspiration!
I don’t have the heart to tell him to be quiet.
He finally stops singing and asks, “Where’s my oatmeal?”
“Consider Your Ways” . . . Ha! I am, Lord, and they totally mystify me, but I know they are ordained by You!
Yes, it’s just another day (5) at St. Joesph’s Hospital in Lexington, KY.
I’d really rather be home in my own kitchen making Grandpa eggs, sunny side-up, but I’m totally grateful to be here today, burnt grits and all.
I’m grateful that Grandpa needs sustenance (which means he’s still alive) because it’s kind of lonely at home without him – interruptions and all.
Grandpa gets done eating Anne’s cheese pudding and says analysis paralysis . . .
Haha. Too much to think about today and it’s gettin’ him down. In other words, Grandpa is growing impatient with his progress.
Today, he ate two eggs, and cheese pudding.
People who are dying can’t eat, I tell him.
You made great improvements today, Grandpa!