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 . . .
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.
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