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

He’s Ain’t Heavy, He’s My Father

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.

 

 

 

 

 

Preparing for The Grand Exit

IMG_9323aAs 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. 

 

Mililiters

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.

Be Still and Breathe Deeply

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.

 

 

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Content Copyright Jill Novak 2009-2015