As I go about my morning duties in Grandpa’s room, checking his blood pressure and taking an oxygen reading, I don’t remember the last time I saw him sitting at the little round table by his window reading his Bible. For the last three years I’ve bought him a scripture tear off calendar. He would always know what day it was by the calendar. Now I find it next to his computer, untouched and pages behind. Another sign that Grandpa is declining.
We see 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 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.
Slowly over the last six years, Grandpa has gone from having a few mobility issues, i.e. the inability to transfer by himself from bed to walker, walker to toilet, to no longer being able to walk and barely being able to pull himself up onto is adaptive walker. He used to work out on a home gym, but it finally became too scary for him to back up to to sit down. It was hard for my husband to let go of the routine. He used to sit in his room and make sure he didn’t fall off the equipment. He also made sure he did all his repetitions, but Grandpa has always been highly self motivated to exercise, at least while he’s been in our care.
I don’t remember ever seeing this side of him when I was younger. Maybe he was used to an exercise routine the four and half years he was in the nursing home, but the funny thing is, when a physical therapist from home health came to evaluate Grandpa, he said he had never seen anyone on a piece of equipment like that past the age of 80. Grandpa was 91 when when we finally donated the home gym to a ministry for young men with disabilities.
It finally became impossible to give him a shower because we couldn’t get him into our hallway bathroom anymore. His bathroom has a beautiful Victorian clawfoot tub, which is completely useless for anyone with mobility issues. Extended family was supposed to help us with the cost of a handicap shower, but never did. As the saying goes, a burden shared is half a burden, but I will never know that relief.
Grandpa’s decline has been so gradual, it’s been hard to discern at times, especially when you are so caught up in the day to day, never ending care. But over the years, it started became predictable that Grandpa would be sick during the holidays, and then, it became the norm for him to have at least one hospital stay a year. Last June, he was admitted to the hospital with the first of three urinary tract infections that have robbed him of his health and vitality. Nothing will bring back the beautiful glow of his skin and the bright light in his eyes. 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. But I don’t know how to let go, how to transition. The Lord will have to do it for me. The tears that had been bottled up for long, freely flow now, knowing no bounds.
Early in our cargiving journey, someone told me, it isn’t your responsibility to keep your father’s body from breaking down, and it’s true. Ultimately, he is in God’s hands. But after helping Grandpa recover from several debilitating and life threatening illnesses, I became extremely proactive in his care because we barely had anything to work as far as mobility goes, and each hospital stay would take a bigger bite into his ability to walk. And so last week, I finally had to order a Hoyer lift to lift him out of bed and place him in his wheelchair.
One thing I know for sure, Grandpa is not going to be able to weather many setbacks that zap him of what little strength he has left to fight them, and to tell you the truth, neither am I. This life of day-to-day 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 lived each day to the fullest, living outside myself and caring for another human being who has so many special needs.
It has been rewarding, overwhelmingly crazy at times, and challenged us 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 ever enduring strength, equipping us over and over again for the God-sized task He called us to.
And what I find so mind boggling and hard for me to comprehend is how I figure in to 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 I am 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.
“What would I do without you?” Grandpa said again today.
“I don’t know, Grandpa,” I tell him, but really, I do. He’d be in heaven by now.
And because Grandpa wants to go to heaven so badly, I just answer, “I don’t know, Grandpa.”
But I wonder as I think about the empty room at the end of the hall , What will I do without you Grandpa?
My emotions are all in a jumble. I do not know how to say goodbye, but I know I must.
He is growing frailer every day.
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.
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.
On a scale of one to ten, ten being the worst thing that could ever happen to you, this is basically a big fat zero, zip, zilch! But, nonetheless, it’s aggravating, and something every caregiver of an elderly family member will experience sooner or later. The mealtime scenario goes something like this:
I prepare a homemade turkey burger patty for Grandpa. I fry it up in a pan, smother it with mushrooms sautéed in butter, and place it on a piece of whole wheat bread slathered with Hellman’s mayonnaise. I sprinkle grated cheddar and Italian cheeses on top of it and melt it in the microwave.
I purposely give Grandpa only one piece of bread so he doesn’t become overwhelmed by the sight of a “full plate.” He rarely finishes his evening meals anymore, so I’ve scaled back on portion size so the visual food cue doesn’t knock him for a loop!
As I place the plate in front of him, I tell him it’s a mushroom burger with melted cheese (sometimes he doesn’t know whether he’s eating chicken, pork or beef, so it helps to tell him ahead of time before he asks, “What is this?”).
“It’s a mushroom burger, Grandpa,” I say.
“I love mushrooms!” he exclaims.
Grandpa digs in, which in laymen terms means he uses his spoon instead of his fork to consume the bite-sized pieces I’ve cut his food into so that he doesn’t choke.
I continue cooking up the burgers for the rest of the family.
“Do you have any sides,” he asks?
Really? I think to myself. Sides?
I look over at his plate. Sure enough, he’s divided his food in half–again!
“You really have everything you need,” I say, thinking about the protein, fruits and vegetables I have served him throughout the day. The truth is, I know he’s probably not going to finish the food I’ve set before him, so why add to it!
I look at his half consumed burger. Serving a smaller portion backfires tonight. He cuts the half serving in half again.
Feeling guilty about the lack of variety, namely something colorful and green, I ask, “Do you want a salad, Grandpa?”
“No.” he acquiesces. But I can tell by the way he said “no” that he doesn’t mean it. Although Grandpa is not big on vegetables, he does like salad.
So I go to the refrigerator and pull out a variety pack of spring lettuces. I place a handful in a serving bowl, and with a pair of kitchen scissors I snip them into smaller bite-sized pieces. I slice each cherry tomato in quarters, and halves again. I add them to the lettuce mix and then I spoon a large dollop of blue cheese salad dressing over the top and stir it all around.
I place the colorful, flavorful, denture-friendly salad next to his plate.
“Here’s your salad, Grandpa. Enjoy!”
I turn around to clean off the counter and put everything away in the refrigerator when I hear the dreaded mealtime proclamation: “I’m full!”
Half of his burger is left . . . the salad goes untouched. Surely I knew that was going to happen? Even though I vow to never be a short order cook, I’m obviously mistaken for one tonight!
Food, glorious food! It’s an obsession with older folks. They can’t live with it, and they can’t live without it, but somehow they manage to dissect it into oblivion or push half of it aside as if they are “breatharians,” living solely on air.
It makes me wonder how much food is tossed into the garbage at assisted care facilities and nursing homes. Actually Grandpa lived in both types of facilities at one time, and I know for a fact that unconsumed food is a huge waste–every day.
At least here at home, I can pull that half-eaten burger out of the fridge and serve it at lunchtime. But as far as the salad goes, it’s wasted–wasted food, wasted time, but I hope not wasted effort.
I try to please, and I guess that’s all that counts.
Maybe next time Grandpa says no, I’ll take him at his word, or maybe not. Sometimes that can prove to be dangerous, like today. But in the grand scheme of things–on a scale of one to ten–it just doesn’t matter. I tend to lean in that direction.
One thing is for sure! In this house, what goes around comes around–leftovers and all. In my experience, feeding Grandpa isn’t really much different than feeding a toddler, except I thought I was done with that stage . . .
I guess the joke’s on me!