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God Determines our Steps, Part Two: A Personal Photo Journey


In the previous post, I shared how God turned my plans for last year upside down through caring for my dad in his illness and hospitalizations. The change of plans affected everything, even Pursuit 21.

I always like seeing faces of the people my friends tell me about. One friend of mine sends me pictures by text so that I can visualize who she is asking me to pray for. Several of you who know about my Dad’s illness have been praying. The few friends I have texted pictures to have appreciated it. Since you know about Dad’s illness now, you’ll no doubt be praying for him. So if you’re like me, I thought you might like to see some photos and videos from the past couple of months.

The past six years, I haven’t taken many pictures with Dad… and never take any with Mom. I’m not a picture person. But as I’ve begun to realize that time may be very short with Dad, I’ve wanted pictures and videos to remember his gentle touch, his loving eyes, his mannerisms, and to remember how we spent these years and the sweet moments God gave us. So… I’ve gotten a little quicker at whipping out the camera.

The most recent pictures and videos were taken only for Mom and me. I’m reluctant to share them publicly, but I pray they are a witness and testimony to you of the faithfulness of God.

Rushed to the Emergency Room

The Sunday before Thanksgiving, Dad was rushed to the ER by ambulance. We weren’t sure if he would arrive alive or not…

Above: In the ER, after Dad had revived on his own.

After they finally let Mom and I go back to be with him, he heard us talking and opened his eyes. The photo to the left is just after Mom got a first kiss from him. Given that he’s DNR, I wondered what they had done in the ambulance to revive him. I later asked and was told they had done nothing. Dad had revived on his own.

After he first opened his eyes, Dad actually puckered to kiss Mom. That’s huge! It’s  something he has a hard time getting his facial muscles to do given his Parkinson’s. Mom was elated. But one pucker was all Dad could give. He was too weak. The video below is her talking to him about it…

 

 

Improving…

In the ER, you can tell in this photo how very sick he was.

Just one day later, I even got a smile with the hot water for a shave. Smiles are VERY big deals!

 

 

 

 

 

 

 

 

 

 

 

Below: Same day, after the shave. He was improving….

 

And the day after that was miraculous! Dad was responding as I did therapy with him…

Dad still remembers us. Still understands everything said to him and around him. Yet he does not talk, except for a word or two a week or less. So how do we know he understands us? By his response.

For example, one day I wanted to brush his teeth. But he was puckering his lips closed and would not let me. He thought I was going to make him eat something. (Swallowing is intense effort for him.)

“It’s not food, Dad. It’s your toothbrush. You’re not going to have to swallow anything. I’m just going to brush your teeth,” I told him. And with that, he opened wide.

When I do physical therapy on him and tell him to tighten his abdominal muscles and sit up by himself with no aid from me, he does it upon instruction. Or, as you can see in the video above, he keeps his arm raised upon instruction.

He hears every word (something nursing home staff would do well to remember, for the sake of all residents … but that’s for another day).

Hey, Good Lookin’

As part of one exercise, I had Dad waving at Mom across the room. Their 56th wedding anniversary was approaching. So we were waving at “Sandy Sue” (what everyone called her when they met) and singing, “Hey good lookin’, whatcha got cookin’…” And saying, “Hey Sandy Sue, I’d like to cook somethin’ up with you!” He had the BIGGEST grin on his face.

“Mom is as pretty today as the day you met her isn’t she?” I asked him.

“Uhh, huhhhhh!” he replied enthusiastically.

WOW! Mom’s and my jaws dropped wide open!

He was able to respond so well with his arms in therapy. … And able to get his body to talk a little. It was miraculous!

He rarely talks. A word once every few weeks at best. And that was only after an August hospitalization. Prior to that, it had been over a year since he had verbalized like that.

A God-Given, Miraculous Moment

He was having such a responsive day, it was clear that God had given us the perfect moment to discuss with him whether he wanted a feeding tube, or wanted to be promoted to heaven.

So Mom and I sat on the bed and explained to Dad the two options. What having the tube would mean — nothing by mouth for at least six weeks, etc. And what not getting the tube would mean — that he would get to go home to be with Jesus. I told Dad that he has fought hard for six years. If he wanted to go home to heaven, it was okay. We wouldn’t blame him at all. We would understand, and we know he loves us. He knew he had been released and it was entirely his choice.

I asked him what it wanted to do.

“I want…” he said.

“I want…” he said again… And each time, in his weakness, the rest of the words faded into whispered tones. I couldn’t understand the rest of the sentence, in spite of putting my ear next to his mouth. I told him how good he was doing at talking and apologized for not being able to understand.

I asked him to answer yes or no whether he wanted the feeding tube. He concentrated hard, took a moment, and mustered all his energy….

“YEAH!” he replied in a near shout.

That one syllable was nothing short of a miracle. 1) Dad was able to participate in a conversation and verbally express his wishes. 2) God gave us an answer to our prayer for direction on what to do. What peace.

Hanging Out

Below: My squeaky but improving voice after the flu… Earlier this day we thought he was being discharged, so we began packing up (thus the mess). But he ended up being kept one more night. I recorded this video because of how much more alert and awake Dad was compared to a few days earlier.

 

Below: How we’ve spent a lot of time… Singing and worshiping… This was from his hospitalization the first half of November.

Persistent Therapists

Although Dad was sitting like this after his August hospitalization and things were looking up…

Above: The day after hospital discharge and initial MRSA diagnosis and treatment. Dad was feeling better. He was engaged and thoroughly enjoying his favorite singing group!

Dad was doing so well. He had just been in therapy and still had the energy to sit up. Little did we know that he was still very sick from MRSA.

 

 

 

 

 

 

 

 

 

 

 

In less than a month, he had lost the ability to sit up. God gave us wonderful, persistent therapists who worked with all their might to pull him up to sit on the side of the bed and get his rigid Parkinson’s joints and hips to bend. He was dead weight, but after a few days, you can see that the therapist supporting in the back was able to let go!

 

 

 

 

 

 

 

 

 

 

Two incredible therapists at the long term acute care hospital continued where they left off, and within weeks, they had Dad sitting up. They even helped us get him outside for a few minutes!

Above: Mom kisses Dad in early October, so glad that after spending a month stuck inside a hospital room, he is finally able to sit up, and on top of that, to get outside and get some fresh air.

 

 

From left to right: My brother Ed, Dad, Mom, and Ram, the man in charge of therapy at the long term acute care hospital. He’s the kind of optimistic, never-give-up therapist that movies are made about.

After being discharged from this facility in mid-October, Dad declined again to the point of spending most of November and part of December in the hospital. He could not get therapy in the intervening time at his skilled nursing facility, so that’s why I became his personal Physical Therapy Assistant of sorts—in order to keep lung secretions moving, prevent atrophy, and promote recovery. But he is again getting stronger and receiving therapy! Praise God!

Switching Roles

Dad and I have switched roles. He took such good care of me when I was sick in my 20’s. And even after I improved and was ‘healthy’ enough to be working full-time in ministry, when I would have sick days now and then, it hurt him to see me so weak and helpless. My spells of weakness were short-lived — just days or weeks long. But he would hug me and long to fix it and make it all better. Since I have no children, this was something I didn’t understand… until I became his caregiver, and he became like my child.

My heart hurts watching him suffer. And in some ways, I can relate to what he’s going through — being trapped inside four walls, trapped in bed, trapped in your body and mind. As I mentioned above and in the previous post, Dad can understand everything you say, but can rarely speak. On miraculous days, we get a phrase from him, or an “uh, huh.” Being non-verbal is one bit of suffering I can’t relate to, as I was always able to talk. Being unable to communicate in any way, either by talking or signing or writing, is what hurts Mom and me the most about his suffering. We cannot imagine being unable to voice needs or desires or express ourselves. I often refer to my illness as a time of imprisonment or being trapped inside my body. But I could talk. My thoughts were not trapped inside me. Dad is truly trapped.

If there are any spare moments, I sit beside Dad in the hospital bed so that he doesn’t feel so isolated and alone. He’s a tenderhearted, gentle man who is so sensitive to touch. This last hospital stay, I spent many hours beside him in bed… and was vividly reminded how long, and boring, and miserable the hours are when you’re stuck in bed. And that was with me able to come and go on my own. He was just stuck there…

In the years I was stuck in bed, Dad built me a bed for outdoors so I could get outside of four walls.

Above: On the back porch, even in chilly weather, lying on the bed Dad built for me. Above my head are Bibles and books. In front are bird watching books and binoculars.

Above: In 1995, before Dad built the bed. It was a hot, Texas summer so Mom had the fan blowing cool air on me from dry ice.

Above: Prior to the bed Dad built, I had to use a lounge chair. Underneath you can see the extension cord for the fan for the dry ice.

 

 

 

In the Texas summer heat, Mom would put dry ice nearby with a fan behind it to blow cool air on me. (This was how redneck’s did it before the days of portable air conditioning units.)

Dad landscaped the backyard and gave me lots of pretty flowers to enjoy from my bed that year.

Above: Dad landscaping my yard.

Above: Mom and Dad landscaping.

Above: My beautiful yard when they were done.

There was nothing the two of them did not do to alleviate my suffering. Dad moved a heavy, iron, hyperbaric oxygen chamber over 200 miles so that I could have it in my house. He carried me upstairs on his back because that was the only bathtub in the house, even with all the weight I had gained from steroid medication. Mom decorated for every season to brighten my days, weeks, months. She spoke positively, loved, laughed, and moved mountains. In the house, she would break down my bed several times a day and move me from room to room to give me a variety of views. She and I do that now—get Dad up in the wheelchair, and move furniture so that there’s room to park him in front of the window and let him see something different.

So, Mom and I have rearranged the furniture in his hospital room… as you can tell below where we turned the bed to face the hospital room window …

 

And in the nursing home room…

This is the other half of the room behind Dad… Mom and I moved the bed so that we could get him up in the wheelchair, facing the window.

So that we can do this—let Dad sit up in the wheelchair and look outside. And do therapy exercises where he can see out:

 

Before he got a feeding tube, we rearranged the room so he could face the window at dinner and look outside while he ate. (He was on isolation because of the MRSA and so did not have a roommate.) Now we do it for his physical therapy…. And so that he can get a shave facing the Christmas tree. After my years of confinement, I know firsthand what a difference it makes to get to face something different!

Yes, we’ve switched roles. But I remember what it was like to be in Dad’s shoes, and I remember how much every tiny comfort and encouragement helped. So this year at Christmas, I did what Mom did for me and gave him lights and fun things to see from his bed.

 

Progress and Praises

Dad is now standing fifteen minutes a day in a standing frame. In fact this was over a week ago. He’s now beginning to stand without the harness. We’re praying God will increase his strength so that he can help transfer himself from bed to wheelchair and back … and can begin to stand on his own!

We have seen God’s faithfulness minute by minute throughout the past seven months … and the past six years!

Christmas Day

Dad and I Christmas day…

He was facing a flower bed of pansies. His neck is so stiff from Parkinson’s that I couldn’t get him to look down. So I backed him way away so he could catch a glimpse with his eyes.

 


 

 

 

 

 

 

 

 

 

 

Above: I was able to give him a couple of his Christmas gifts. Any time Dad tracks with his eyes, we celebrate it. As you can see, he’s tracking and look at me well with his eyes.

 

Grace and Grit

Dad and I in 2003, the day I graduated from Baylor, the day God fulfilled His promise to restore what had been taken during my illness.

This season has required two things: God-given grace and grit. You’re often so exhausted and drained you want to cry. Plans are constantly turned upside down. Bills and laundry and dishes and household and ministry maintenance to-do’s pile up. If you get a second to do anything, it’s in the middle of the night in place of sleep. My neurological and adrenal conditions are exacerbated by lack of rest, causing irritability, sound sensitivity, and debilitating weakness, among other issues. Yet you can’t pull aside to refresh and recup.

At the same time, it’s painful to see Dad suffer. It’s hard to see him go from being such an active man to this state. There is always grief, sadness, and mourning. Yet the tiny joys and milestones bring exuberant celebration and praise to God. You celebrate… grieve… remember past years… savor every moment, every touch, every glance, every expression he makes… and fight minute-by-minute to give him the best care possible.

Dad and my niece, Jodie. An agriculture major, Dad was a steer wrestler in college rodeo when my mom met him. Jodie got her love of horses from him.

You deal with unconscionable nursing home and hospital failures. The stress of having a loved one suffering such illness is hard, but it pales in comparison to dealing with nursing home incompetence and neglect. It’s exasperating and has taken the hardest toll on my mom, much more than Dad’s illness. [1]

In this season, we’ve been hard pressed on every side. Physically. Mentally. Spiritually. Financially. Mine and Mom’s bodies (and no doubt Dad’s) have felt as though we’re on a death march. And yet for Dad’s sake, we must endure, stay upbeat and positive, and persevere.

I have come to understand firsthand what things were like for Mom and Dad when I was sick. For Mom especially as she was the one tasked with my 24/7 care. She was dying inside and never showed a glimpse of it to me. She was witty, funny, positive, engaging, upbeat, and comforting. I never knew at the time what she was going through. I learned about it years later as she told audiences.

I’m not sure I would know how to caregive had I not been the bed bound patient and recipient of Mom and Dad’s care. Even after I improved and was working, she and Dad spoiled me and cared for me, and did extra tasks so I could put all my efforts into Shades of Grace. How could I not pull out all the stops for them? I’m blessed.

Even though it has been trying, I have never been more content and fulfilled in my life than when I’m caring for Dad. It’s only when I attempt to return to my life and have to deal with the after-effects that frustration encroaches.

Reasons Why

Dad and my nephew Jackson in 2014, after a playoff baseball game. Dad was in the beginning stages of his illness. We especially treasured that baseball season.

It’s hard to understand why God would allow Dad to go through this—hard to see any good reasons why He allows us to go through so much suffering at the end of our lives. But I know this, God does have a good reason, a lot of good reasons in fact.

As I mentioned in the previous post, angels and demons are learning a lot about God as they see what he’s writing on the blackboard of our lives. They’re learning from Dad’s faithful, patient, trusting response to his suffering. They’re seeing evidence of the fact that Jesus is more than enough. They see the fruit of Dad’s unwavering trust and confidence in God—that Dad never gets angry or complains. When he is able to find words, they’re kind words, affirming words, words to thank you for your care. Angels and demons see God’s keeping power and the enormous amount of peace He has given Dad.

Dad continues to teach me and set an example for me. When I was younger, he set an example for me in how live by faith, serve in ministry, be sensitive to the Holy Spirit, and love others with Jesus’ love. Today he’s teaching me how to go through suffering with perseverance, patience, kindness, gentleness, gratitude, love, and quiet, confident trust in God.

When the grandkids were young…

At the Concert of Prayer in 2009. Dad speaking to Joel Wier, who led the worship.

Mom, Dad, and me in 2015.

Eternal Rewards

This season is also accruing rewards in heaven for Dad. Something is happening spiritually behind the scenes that human eyes cannot see. I know this in part because of my own experience with suffering. But we also see evidence of this truth in scripture. The following passages tells us that our faithful response in suffering accrues eternal rewards.

James 1:12

“A man who endures trials is blessed, because when he passes the test he will receive the crown of life that God has promised to those who love Him.” (HCSB)

1 Peter 4:12-13

“Friends, when life gets really difficult, don’t jump to the conclusion that God isn’t on the job. Instead, be glad that you are in the very thick of what Christ experienced. This is a spiritual refining process, with glory just around the corner.” (MSG)

1 Peter 1:6-7

“For a short time you have had to struggle in various trials so that the genuineness of your faith—more valuable than gold, which perishes though refined by fire—may result in praise, glory, and honor at the revelation of Jesus Christ.” (NIV)

“Pure gold put in the fire comes out of it proved pure; genuine faith put through this suffering comes out proved genuine. When Jesus wraps this all up, it’s your faith, not your gold, that God will have on display as evidence of his victory” (v. 7, MSG).

2 Corinthians 4:17-18

“We wish you could see how all this is working out for your benefit, and how the more grace God gives, the more thanksgiving will redound to his glory. This is the reason why we never collapse. The outward man does indeed suffer wear and tear, but every day the inward man receives fresh strength. These little troubles (which are really so transitory) are winning for us a permanent, glorious and solid reward out of all proportion to our pain. For we are looking all the time not at the visible things but at the invisible. The visible things are transitory: it is the invisible things that are really permanent.” (PHILLIPS).

John Bisagno, Bill Eustis, and Dad at the dedication of a new church auditorium where Dad pastored in the 1970’s. Bill was Dad’s mentor as a pastor and was Mom and Dad’s first exposure to the life of faith. He is the pastor who Mom speaks about when she tells her story. He’s the one that, when Mom was 9 months pregnant with me, asked volunteers to stand in church and tell what they were believing God for. Mom stood—in the days before sonograms—and said she was believing God for a little girl.

Dad in his study where he prayed and prepared sermons.

Dad preaching.

Out of all my random pictures and personal journey, I want to leave you with one thought—your pain has a purpose. It has many purposes, many of which you won’t know until heaven. But there is one purpose you can identify and be encouraged by today: your pain is amassing immeasurable eternal rewards. There is “glory just around the corner” (1 Peter 4:13).

 

PART ONE OF THIS POST

RELATED POSTS:

 

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  1. A note of unsolicited advice if you have a parent in a hospital or nursing home:

Make sure someone is with your parent or loved one in the hospital, no matter if they’re verbal or not. All our time in the hospital lately has confirmed that. Even more so if someone is confined to bed (at risk of pressure sores) or is non-verbal. Someone must be present constantly.

For example, on several occasions at different hospitals, Dad was restricted to nothing by mouth. He was getting fluid by IV only… but nurses forgot to connect his IV, or in one hospital, insisted wrongly that it had not been ordered. Two different hospital pharmacies have made significant mistakes with his medications (failing to give ordered blood pressure or heart meds for example, for several days… or in one instance, mistakenly ordering a once daily medication to be given once hourly). These four months in the hospital have been eye-opening. To say nothing of how eye-opening the past five years in the nursing home have been.

And if you have a loved one who goes from hospital to nursing home and back, stay on top of every detail and every medication both places. With every transition Dad has had, there have been multiple medication mistakes. It takes me almost a week each time, with daily effort, to get it all straight again. A week to get it straight in the hospital, then a week to get it straight after he leaves.

NEVER let a parent go to the hospital without being on top of every detail. EVER. It is a full-time job to stay on top of the details and make sure they receive adequate care, but it’s necessary. Even more so if you have a loved one in a nursing home.

Nursing home failures are ubiquitous and unconscionable. At best they’re dismissed and at worst, they’re committed and condoned by the very staff who could effect change. The stories I could tell after five years—failures that if committed by someone in a family atmosphere would bring the wrath of police, CPS, and every applicable law enforcement agency. But somehow, nursing homes get a pass. If caring for Dad was not a full time job for two people, Mom and I would lobby legislative representatives and state regulatory agencies to make drastic changes. Given that medicaid funds people’s nursing home care, it amounts to tax-payer funded abuse and neglect of our most vulnerable citizens. But for now, we press on and fight the battles in front of us each day.

What kills us most is knowing that most people have no family to look out for them. Every day there are a host of ways Dad would suffer if we were not there to either provide the care ourselves or go to bat for the responsible entity to do so. If you have a loved one in a nursing home and you only see them an hour or two a day, you have no idea what’s REALLY going on there. Spend a minimum of eight hours a day there, every day, for several weeks, and see if your impression of the standard of care does not change.

 

 


 

Disclosure of Material Connection: Some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, Shades of Grace will receive an affiliate commission. Regardless, I only recommend products or services I use personally and believe will add value to my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

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