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!
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.