FOUNDATION AWARD FIRST PLACE WINNER 2018 – ARTICLE

Blue Ridge Mountains Christian Writers Conference, Ridgecrest, North Carolina

I live here.

It was Mom’s handwriting all right—on a notepad scattered among many notepads.

I cried when I found it. Mom must have scribbled it during a cognitive moment and hoped it would help her remember where she was and why she was there. But it didn’t. Late stage Alzheimer’s, also referred to by me as “it,” stole her short-term memory and many decades of long-term memories. She couldn’t even remember that she lived in a small Assisted Living unit at a care facility.

Mom’s sundowning from it started every afternoon by two o’clock. Her agitation and wandering got progressively worse when evening came. One evening she called 911 and demanded that they send over a squad car to take her back to her childhood home. She told them nobody was listening to her, she had no family, and everyone refused to bring her home. A few months later in the middle of the night, she entered the room of a sleeping resident who was new to the facility. Mom screamed at the woman and insisted that the woman tell her where my dad’s dead body was located. Gruesome indeed.

Her delusions convinced her that she lived in a motor home that had to be moved right away, or else she would be kicked out of the campground where she thought she was parked. She called me and insisted that I bring over the key and move the motor home immediately. Her delusions also convinced her that I purposely played a hateful practical joke on her by shrinking her overcoat in hot water so it wouldn’t fit her anymore.

And her hallucinations painfully lied to her that people were in her bed and she had to sleep on the couch. When my husband Chuck and I saw the rumpled afghan on the couch the next day, we held back our tears. Her perception was her reality, and her reality was a frightening place.

We had a front row seat as Mom’s caregivers and could see what Alzheimer’s looked like. It was a familiar sight—my Dad died of it only a few years earlier. But we couldn’t internally feel their fear, anger, anxiety and oppression. I couldn’t know … didn’t want to know … what it was really like for my sweet mama, my best friend in life, to live with such a cruel disease….

…until I heard about The Alzheimer’s/Dementia Experience: Take a Walk in Their Shoes simulator from a television feature story aired by KTHV-11 (Little Rock, Arkansas; see link below).

The Alzheimer’s simulator is a project of the UAMS Donald W. Reynolds Institute on Aging and the Arkansas Aging Initiative funded by the Donald W. Reynolds Foundation and a grant received from HHS/HRSA.

I admit I was a little skeptical that any simulator could allow me to feel the fear, confusion and anger that I could see in my mom’s eyes. And I was concerned how emotional it might be for me to get a genuine glimpse of what both my parents endured. I had viewed their Alzheimer’s journeys from the front row, but I couldn’t go inside their world.

Until now.

My husband and I scheduled an appointment so we could each do the simulation in Hot Springs, Arkansas. When we arrived, the staff and Coordinator Valerie Claar were absolutely wonderful. However, the jovial countenance that entered the building with me quickly changed when it was time to be prepped for the ten-minute journey through Alzheimer’s.

I went first. They escorted me into the training room to fill out forms and get suited up. The purpose of the simulator is to “help care providers better understand the symptoms of Alzheimer’s disease and dementia, including loss of hearing, vision, sensory nerves, fine motor skills and onset of arthritis and neuropathy” (www.agec.org; see link below for more information).

I placed in each shoe a special insert that made it uncomfortable to walk. Special goggles were put over my eyes to alter my vision, and a set of headphones attached to a CD player were placed over my ears so that I would hear disjointed sounds and startling voices. Gloves were put on my hands, and modifications were made in order to alter my fine motor skills. I was advised that a “monitor” would be in the simulator room with me, but that she would not answer any questions or respond to anything I said or did. When I was ready, the CD player was started, and I was escorted out of the training room and led to the door of the simulation room. I needed help walking, and I could hardly see where I was going. At the door of the simulation room, the monitor gave me instructions.

She told me that I had to complete five tasks—in order—during the 10-minute simulation. Each task had at least two separate steps. I remembered that I couldn’t ask any questions, so I knew she wouldn’t repeat the five tasks. One by one, she gave me the assigned tasks. At this point, I started to feel my emotions swelling. I was fearful that I wouldn’t remember the tasks, let alone remember them in correct order. And because I couldn’t remember them with all the distractions, I was afraid I had Alzheimer’s too. I wanted desperately to succeed, but once she got to the third task, all I could do was to try to hear her words and hope I could remember something. I started to feel what I believe my mom felt—she wanted to follow instructions and do things correctly, but she just couldn’t.

The monitor escorted me into what seemed to be a dark room. Perhaps it was the goggles—I don’t really know. She said my time “starts now.” The first task I thought she told me was to find the white apron and put it on. With hearing and vision loss, and simulated neuropathy on my feet, I shuffled about the room to find the apron. I frequently muttered, “Apron … apron … apron.” When I couldn’t find it, I went to a task that I could remember and locate with my limited vision. I nailed that one and felt pleased. But I couldn’t remember the next one and decided that order no longer mattered. And I was angry because I couldn’t ask for help.

Hmmmmmmm …. how many times might my mom have conceded that “order” wasn’t necessary? Like when she stored her toothpaste in the underwear drawer? Or flushed her lower partial denture down the toilet? Was I starting to understand why she was so upset when no one would listen to her pleas to drive her back to her childhood home over 800 miles away?

And how hard was it when Mom didn’t know where she was supposed to go or what she needed to do next? Did she get startled by all the noises in her head just like the noises I was hearing in mine? Is this why she wrote notes to remind her in which laundry room she was washing her clothes or where she lived?

And did she have pain in her feet that resulted in her shuffled walk, and did her distorted vision cause her gait to veer to the right?

My initial skepticism went out the window. I was now frustrated that I couldn’t remember what to do, was agitated that I couldn’t find the darn apron, and wanted to punch out an annoyance with the lighting in the room that angered me as much as fingernails being scraped on a chalkboard. Guess what? I realized that I was experiencing the frustration, confusion and anger of dementia.

I continued to try to find my way around the room, cocking my head in an uncomfortable position in order to try to see through the goggles. C’mon, Cheryl. Accomplish something. Anything. I stumbled on a table and remembered a task. When I completed it, I felt such a sense of accomplishment.

Perhaps that’s why my mom always wanted to continue to do her own laundry? It wasn’t that she wanted clean laundry. What she wanted was independence.

Then I stumbled on another task. Oh, yeah, I remember that one now.

The noises in my head, the hearing and vision losses, and thinking about how this felt for my mom totally distracted me. I was clueless about the stupid apron that was playing tricks on me, and I was clueless about the one remaining task…

…until once again, I stumbled upon the one remaining task. I performed it while muttering, “Apron … apron … apron.”

The monitor interrupted me and said my ten minutes were over and the simulation was completed. My first thought was, I can’t believe I couldn’t do five basic, simple tasks in ten minutes. Did my mom feel defeated too? Maybe now I can find that dang apron and rip it to shreds … after I destroy the huge annoyance in the room and throw it out the window.

I said so long to the CD player, goggles, inserts and gloves. Valerie and I had a debriefing session that helped me understand how they designed the simulator and the impact it’s making in their caregiving training programs. We talked about how this simulator might not be appropriate for a family caregiver who’s living through the worst parts of the late stages of the disease. It’s too raw. It’s too emotional. But for professional caregivers and family caregivers just starting to provide care to a loved one, I believe the simulation offers great insights into quality of care and allows the participant to walk in the shoes of someone with Alzheimer’s.

The simulator was life changing. I now know what it felt like for my mom and dad. It didn’t simulate when Dad could no longer remember how to chew or swallow food, despite my helping him put the spoon to his mouth, asking him to open his mouth, and reminding him to swallow. But it did allow me to experience fear, anxiety, agitation and confusion. It did allow me to experience that I really wanted to do a good job and complete the tasks, and that I just couldn’t remember them.

Several days after the simulator, I emotionally wished I could have a do-over in caregiving. The simulator made me realize that it was much harder on my mom than I ever imagined. I wept for my mom. I wept for things I could have done differently—if I had only known. I remembered how much she wanted to do things right. Mom even told me, “Please help me. Please don’t stop loving me because I do stupid things.” I lovingly reassured her that I would love her always and would always be her life manager. With tears, we both smiled.

I got angry all over again about how it stole so much from my parents, and that they suffered more deeply than I knew at the time. Perhaps I could have been more gentle, slowed down my pace, quit trying to fit Mom’s world into my own. The good part? I rediscovered the collateral beauty in the time that I did have with my parents, especially my mom through three years of caregiving for her. She was the first to hold me in the hospital (when I was born), and I was the last to hold her in the hospital (when she was released from it). I truly knew my mom, and there was much beauty in how we loved each other.

Oh, and the apron? There was none. I didn’t remember the correct details of the task.

KTHV-11 Feature Story:  http://www.thv11.com/news/health/new-simulation-allows-caregivers-to-walk-in-the-shoes-of-dementia-patients/487832209

Link to UAMS information:  http://www.agec.org/alzheimersdementia-experience-take-a-walk-in-their-shoes/​

© 2018 Regifted Grace® Ministry LLC

We help weary caregivers find the courage they need to regain hope and stop feeling alone, fearful and broken.

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Scary things scare me! Many things scared me while I was a caregiver. And recently I had to confront something else I feared—an MRI. I wasn’t excited about being shut in a machine with deafening noises that to me seemed like cruel and unusual punishment.

I sat forever in the waiting room—well, okay, perhaps it was only ten minutes. But don’t they know that the length of my wait increases the intensity of my fears?

I recalled my anxiety over zip-lining in the Ozark Mountains. After a hairpin-turn in an open-sided truck with two tires on the road and two hanging over a ridge, the guides issued me a hard hat, gloves, and a harness that would somehow stop my plummet from the cable into the forest 100 feet below. They dared to decline my suggestion for sheathing me in infinite amounts of bubble wrap to protect me from the fall. Hey, at least the popping sounds would provide some amusement!

The guides attached my cable to the overhead line and instructed us that we now were going to walk over the bridge to the diving, er, I mean, zip-lining platform.

Bridge? All I saw were ropes attached to a few two-by-fours. My husband was behind me and turned the rope bridge into a trapeze, swinging from side to side. He took great delight in my screams to stop it now! We finally made it to the other side of the bridge and stood atop the platform which appeared taller than Jack’s beanstalk into the clouds. I had a dilemma. I didn’t want to jump. And I didn’t want to go back the way we came. So I made my husband go first. He sailed through the air with the greatest of ease (that trapeze thing again).

However, the guides were now convinced I was one of those people who never take the giant leap for mankind. Convinced flying through the air was better than tackling the rope bridge again, I said, “Let’s fly.” Off I flew—and had the time of my life! And the guides stood in disbelief.

Back in the waiting room, I rationalized that if I could sail through the air on a cable, I could lie in a machine while magnets disrupted the atom structure in my body. The technician recognized my fears, convinced I was one of those people who would never make it through the imaging. She suggested I come back another time and have sedation. I felt marked with failure for my lack of courage, and I hate sedation. I resigned myself to the MRI. She positioned me in the machine, briefly held my hand, and gave me a buzzer to alert her when I was convinced I would die. I said, “Let’s roll.” Survival mode began as I was literally rolled into the machine at the same time she told me it would be thirty minutes of terror—um, I mean, scans!

Each scan started with a loud jackhammer noise and continued with vibrations and a distinct tone. I liked the one with a gentle, but loud buzzing noise because it reminded me of the white noise machine in our bedroom. I started to relax. The next one sounded like a rapper humming a mantra. I wanted to sing, but was instructed not to move. Another sounded like a rhythmic voice repeating “believe believe believe.” Okay, God. I’ve been praying against my fears. I believe, all right. But now can you make it shut up?!?!?! The last scan sounded like a helicopter. I nearly cried as I remembered a magnificent helicopter ride into the Grand Canyon with my husband. But since I was instructed not to move, crying was out, too.

I ultimately wasn’t one of those people. I never pushed my buzzer to get out early. I thanked the technician for her compassion and praised God for the courage to endure that machine for thirty minutes. He taught me that all I needed to do was to believe that my fears were never bigger than His presence.

God says we are “fearfully and wonderfully made” (Psalm 139:14 NIV). I naturally liked the part about being made wonderful, but I struggled to comprehend being “fearfully made.” When I checked the meaning of fearful, I was reminded fearful means to be afraid or filled with awe.

Daniel must have been afraid of the lions when he entered the lion’s den. But he was awed by the Lord’s protection from the lions’ jaws.

Queen Esther must have been afraid when she approached the King. But she was awed by her security with God, not in royal privilege.

Moses feared failure. When God asked him to lead the Israelites to the promised land over a 40-year span, he continued to trust that God’s plan would come to fruition, despite his speaking abilities. He was a leader, and he didn’t fail. And He was in awe of God’s provision for them.

Mary feared the angel who appeared to her to tell her that she would conceive and give birth to the Son of God. She was an unmarried teenager and undoubtedly feared the scorn of others. She held strong to her faith and was in awe that she was chosen by God to give earthly birth to His son.

Isaiah was asked by God, “Who shall I send?” Isaiah responded, “Here am I. Send me.” (Isaiah 6:8)

David must have been afraid as a child when he selected stones to slay the giant or when his grievous sins as an adult were revealed. But he was awed by God’s power to protect and to forgive his moral weaknesses. God considered him to be a man after His own heart (Acts 13:22 NIV).

Alzheimer’s scared me. Being a caregiver to first my dad and then my mom raised many fears. I didn’t want to fail, I wanted them to be proud of me, and I didn’t want to get Alzheimer’s. The stress and isolation were scary. I had to make legal, medical, and logistical decisions for my mom. All caregivers face this, and it’s hard. Impossible. Seemingly never-ending.

But how beautiful it is to be fearfully and wonderfully made! Fears often lead us to safety. God desires our awe of Him. He knows we get lost in real fears, and He promises His love through them. God said, “Do not fear, for I have redeemed you; I have summoned you by name; you are mine” (Isaiah 43:1 NIV).

Even in our fearful moments, He never rejects and always protects—because He summons us by name into His presence.

©2018 Regifted Grace Ministry LLC

We help weary caregivers find the courage they need to regain hope and stop feeling alone, fearful and broken.

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About the Reviewer: Steve Krumlauf is a familiar voice in television and radio. He produces commercials, narrations, audio books, and voice tracks through his company, Voices Over Easy Media Services. He is also a frequent book reviewer via Amazon and Goodreads. Steve has served as a principal image voice for The Worship Channel (a 24-hour, Internet-only music and teaching programming service). He’s also a the voice track producer for Understanding the Times Radio, an hour-long interview program syndicated to over 800 radio stations nationally as well as globally on the Internet and Sirius XM satellite. Steve and his wife, Susan, have two grown daughters, one grand son, one grand dog, one grand cat and live in Minnesota.

In the classic Walt Disney cartoon, The Lion King, there’s an iconic tune that celebrates transitions from generation to generation.  The Circle of Life.  Doesn’t that same “circle” exist within a single life?  Think about it.  We all begin life as innocent newborn babies and transition through the various stages of life.  Most of us go from infant to toddler to pre-school to middle-school to high school to college to career to parent.  This is where the great circle of life begins.  As parents, we watch our children go through the same transitions.  But, at some point, a lot of us parents become innocent children again, totally dependent in some way or ways upon our children.  Ironic isn’t it?  As newborn infants and toddlers, we are totally dependent upon our parents.  Much later in life, as parents, we can become totally dependent upon our children.  The circle of life.

That’s where Cheryl Crofoot Knapp’s chronicle of her parents’ transition from independent adult to totally dependent adult begins.  As Knapp’s sub-title indicates, her intimate, bitter-sweet diary, Undefeated Innocence is the story of how God helped her and her parents navigate a journey through Alzheimer’s disease.  As the author notes in her preface, “Alzheimer’s attacks its innocent victims.  But it doesn’t defeat innocence.  Those who have it seemingly return to being a young child and regain simplicity.  Physical life ends like it began and returns to undefeated innocence.”  The circle of life.

Knapp tells us in the fourth chapter, “God called (her) to use (her) spiritual gifts (of) mercy, faith and prophecy . . . through writing, speaking and teaching.”  Two of those three gifts are clearly on display here.  Here Knapp outlines both an internal and external method she developed to diffuse her mother’s anxiety attacks.  Here we learn about the two categories “most people with Alzheimer’s fall into.”  Here Knapp teaches the emotions of exclusion someone with dementia can feel.  Here we learn about the stages of Alzheimer’s.

Within these 200-plus pages, Knapp shares the lessons she learned about overcoming the fear of caregiving.  “Being fearful is not a sign of weakness,” the author says, “It is merely the beginning of courage and bravery.”

On that positive note, Knapp reveals the secrets of “demonstrating authentic love and goodness” to her mother.  Want to know one of the golden rules of caregiving?  You’ll find it here.  Want to know the top ten signs of stress common to dementia caregivers?  You guessed it.  It’s here.  Want to know what fuels external persecution in caregiving?  Yup.  Right again.  It’s all here.

In short, Undefeated Innocence is a well-crafted, adult caregiver owner’s manual, well-lived by a gifted communicator.  Whether it’s dementia or some other life-altering challenge, this should be required reading for all adults who may some day find themselves in Cheryl Knapp’s shoes.

November is National Alzheimer’s Awareness and Family Caregiver Month. It was given that designation in 1983 by President Ronald Reagan, long before anyone knew that he would die of the very disease he set out to recognize.

Click on the ore boat photo to go directly to the first part of the introductory series called CARE TALKS, a video series offering encouragement to the caregiver.

One of the hallmark symptoms of Alzheimer’s, the most common form of dementia, is the loss of decades of memories. The loss begins slowly, traversing over several years. But like a boulder starting to roll down a mountain, it picks up dramatic, breakneck speed and ultimately results in carnage for everything in its path.

It was easy to tell how many decades of memory my mom had lost based on what she could remember. When she told me her husband was picking up their daughters from school, I knew she had lost more than four decades. When she called 9-1-1 and told them to urgently send a squad car to return her to her childhood home, I recognized her loss of over five decades. When she asked the nurses where she could find the nearest bar so she and her girlfriends could go pick up boys, I knew she had lost over six decades. And it gave me a glimpse into her teenage years that I wasn’t sure I wanted to see!

My husband took the above photo of a lake freighter that emerged through fog clouds during a wedding ceremony on the north shore of Lake Superior. It’s a rare treat to see ore boats, let alone one docking within yards of where we stood. At first, we knew something was entering the small harbor. Eventually we were witness to the full splendor of the magnificent ship cutting through the fog.

We recognized the symbolic similarities between the ship in the fog and a person’s struggle with Alzheimer’s. We can’t always make out what it is in the early stages of its arrival because the fog hides it. Sometimes the fog is thick and nothing can be seen at all. Sometimes its outline becomes unmistakable during moments when the fog dissipates.

In both cases, there is innocent beauty. I like to call it collateral beauty. An ore boat is still beautiful whether or not it’s hidden in the fog. A life with Alzheimer’s is beautiful, too. Mom entrusted me with the matters of her life. She smiled when I reminded her that I handled her appointments, schedule and finances–all of the things in her life she could no longer understand. I told her I was her life manager. She replied, “Oh that’s good. I need one of those.” And then we would both smile. I loved being able to serve her and bring some peace in the storm. I loved her smile. I loved those clear moments when she said, “I love you, Cheryl.” And I loved those times when I not only held her hand, but she held my hand.

Caregivers are heroes–filled with honesty, sensitivity and integrity. They place others above themselves, are their hands and feet and unselfishly serve. And they look for those moments of collateral beauty. If you are a caregiver, THANK YOU!

Do you like to thank police officers or military personnel for their service?

I have three assignments for you during the month of November.

• Write a short note to a caregiver (even if you are one, too) to say thanks for being a caring servant.
• Make a short phone call just to ask, “How are you doing?” A friend and co-worker did that a lot during my years of caregiving for my mom. Dawn also asked how Mom was doing, but she asked about me first.
• Pray for God’s grace in the caregiver’s life.

In future blogs, I’ll be telling you about some of the newest research relating to actual cures and earlier diagnostic tools. The efforts of the Alzheimer’s Association are helping in those areas. On November 4, 2017, my husband and I are walking in the Walk to End Alzheimer’s in Little Rock, Arkansas.

If you could make a donation at the link below, you will become part of my team to help find viable cures and early diagnoses. Thank you so very much!

http://act.alz.org/goto/cherylcrofootknapp

Together, we can find a cure.

God bless your day!

SEE JUNE 11, 2017 POST FOR CHANCE TO WIN GLEN CAMPBELL’S FAREWELL CD–Deadline is June 30, 2017–No Purchase Required

“Why am I here? I want to be dead. Today was the day I was supposed to be dead. Can you tell me why I can’t be dead?” Mom’s words spoken through the filter of mid-stage Alzheimer’s horrified me. I thought, How could our nightly phone call take such a terrifying turn?

Mom and I were best friends. She needed my help, and I needed a lifeline to find solace for my tears. I took a deep breath and silently asked God to give me words to say that could bring comfort to both of us. I told her Jesus unconditionally loved her and had an appointed time for her to be with Him. I said, “Mom, I love you dearly and have been richly blessed to have you with me.” Her voice steadied, as did mine. God released us momentarily from the heinous lies and emotional chaos of the disease that took my father a few years earlier.

But Alzheimer’s never goes on vacation. It steals short-term memory and confiscates long-term memory a decade at a time. It followed my mom through senior independent and assisted living, as well as skilled nursing. Mom repeatedly asked if her husband was dead, called 911 to demand that someone bring her back to her childhood home three states away, punched a pregnant nurse in the stomach, believed no one loved her because she couldn’t remember if anyone visited, and barged into another patient’s room in the middle of the night demanding to know where her dead husband’s body was located. She wanted to know where her young children were because she couldn’t remember my sister and me as her adult children. And everything suddenly seemed to be stolen, when in reality she probably flushed them down the toilet.

Graphic? Yes. Did I feel empathy with Job? Yes.

Job suffered great calamity and loss, but through it he experienced life-changing rebuke directly from God. As I studied Job 38-41, I wept as God recounted all that was under His control because He created it all. He has power over everything. That’s easy to say, but reading Job allowed me to experience a taste of what God has done, is doing and can do. We don’t always believe God listens, hears or responds. But “God’s voice thunders in marvelous ways; He does great things beyond our understanding” Job 37:5 NIV.  “God does speak . . . though man may not perceive it.” Job 33:14 NIV.

God brings us out of darkness and gloom and breaks us free from our chains. Psalm 107:14 NLT. I wasn’t sure my chains were breaking, but I knew how broken I felt as Alzheimer’s continued to rob my family. I couldn’t understand why God would allow the fragments of my mom’s life to become so terribly broken. “I will repair its broken places, restore its ruins, and build it as it used to be.” Amos 9:11 NIV. Where was God in the brokenness? How could He rebuild my mom? What great things beyond my understanding could He possibly give us? In reality, I was asking God to prove His grace, much like Job.

I prayed that Jesus would come for Mom and release her from the bondage of the disease. I asked Him to prepare and allow me to be present when He brought her to her promised home in paradise. Luke 23:43 NLT.  My mom and I prayed the Lord’s Prayer together. The promise of “Thy kingdom come, Thy will be done on earth as it is in heaven” was seared into me. Matthew 6:10 NIV.

On Mom’s release day, I received a call from the hospital. She was being transferred to the Emergency Room. I raced like Jeff Gordon to drive the twenty-mile drive through the Ozark roads. With tears staining my steering wheel, I begged God not to take her until I got there. After all, I felt He prepared me to be with her.

My pastor and his wife met me at the emergency entrance of the hospital. We were escorted into a family meeting room. God promises that He’s never late, never early, and always on time. But had I arrived in time?

The doctor came in and through torrents of tears, I begged him to let her go. As we were escorted to the emergency suite moments later, the nurse told me Mom’s heart had stopped. I paused to breathe in God’s presence. I’d never done “this” before. I entered the room, stood beside my beautiful Mom, kissed her lips and held her hand. I prayed, cried, said goodbye, and praised God for getting me there on time.

Fifteen minutes later, the coroner came in and introduced himself. I continued to hold my mom’s hand as I turned to greet him. “Is it okay if I hate you?” I flashed a smile, and he graciously responded, “Most people feel that way too.”

My attention turned back to Mom, and I clearly felt her index finger twitch. I wanted to scream, “She’s alive!” But I was afraid they’d think I was crazy. I stared at her face and wrote off the twitch as something that happens after death. That thought was quickly dismissed when a spark, like static electricity, passed from Mom’s finger through mine, and I remembered that her heart stopped more than fifteen minutes earlier. And there were no wires connecting her to any machine.

I recalled my prayers to my heavenly Father, who prepared me in advance to be with Mom when her spirit passed. I was reminded of the power of grace and the realness of God’s presence. I believed my earnest prayers in the car were fulfilled. Her heart stopped immediately after I arrived in the emergency department, and her time of death was noted as three minutes after I first held her hand. He answered my prayer to be with her through the death of her body, and He answered my prayer to be with her during the release of her spirit. Perhaps the twitch was Mama reaching for Jesus, like she did many times during her final Sundays at church. Perhaps the surge was when her spirit left and she first touched Jesus. I believe God gave me a glimpse of Mom’s first moments in paradise, and I believe the Holy Spirit directly touched me during the release of my mom’s spirit. Moments later, the room felt very empty, even though many people surrounded me. I silently praised my Creator for His faithfulness, and then methodically took care of business with the coroner, the funeral director who buried my father years earlier, and the hospital staff.

Job’s story is replete with stories of God’s power. God didn’t have to give me a glimpse of eternity. But because I believed, because I dared to see a glimpse of His power and love, and because I trusted that His kingdom would come and His will would be done in my mom, He gave me the gift of sharing in the moment she went to paradise. Why? Because He loves, He promised, and because He could. He repairs and restores our broken places. And He escorts us personally into paradise. Mom was the first to hold me, and I was the last to hold her. He does indeed do great things beyond our understanding.

And today we celebrate her first birthday in heaven.

June 25, 1934 was her first birthday on earth; June 25, 2017 is her first birthday in paradise.

Happy birthday, my sweet mama.

The beloved legendary song master Glen Campbell released his farewell album entitled “Adiós” on Friday, June 9, 2017. Adiós was recorded in 2012, not long after Glen was first diagnosed with Alzheimer’s Disease. It features Willie Nelson, Roger Miller, and Vince Gill, as well as Glen’s talented daughter, Ashley.  Glen is well-known for his savory list of hits which includes Gentle on My Mind, Rhinestone Cowboy, Galveston, By the Time I Get to Phoenix, Wichita Lineman, Southern Nights, and Dreams of the Everyday Housewife. However, his farewell album features the songs he loved and never previously recorded. Glen is now in the late stages of Alzheimer’s.

What brings me to tears is that the Campbell’s family story is so similar to many of us who have loved and caregiven for family members with Alzheimer’s. It’s a vicious diseases that steals memories of the past and moments for the future. But by being a caregiver for my mom, I discovered I could parlay sadness and loss into collateral beauty—I got to live out my life with Mom for three years in extraordinary richness. I was able to return to her the compassionate commitment she gave to my life. I got to hold her like she held me—emotionally, physically, and spiritually.

READ BELOW FOR DETAILS ON HOW TO ENTER FOR CHANCES TO WIN A CD OF GLEN CAMPBELL’S FAREWELL ALBUM “ADIÓS”.

It’s been nearly a year since Alzheimer’s relinquished my mom to her heavenly home. The “one-year anniversaries” are starting to complete a full circle. But I have the three hardest yet to come.

Tomorrow is my birthday. Last year for my birthday, my mama and I cuddled side-by-side under a blanket on a small couch in the day room of the hospital where she had been admitted days earlier. Her new medications made her very sleepy. We held hands as she gently fell asleep on my shoulder. I held her in my arms as she used to hold me in hers. As she lightly snored, finally finding moments of restful sleep, I knew it would be my last birthday with her. I breathed in every minute, every second of our hour on the couch. Tomorrow is the first birthday in 59 years where I won’t hear my mama’s voice wishing me a happy birthday.

June 25 would have been my mama’s 83rd birthday—I will still sing her the happy birthday song.

And June 30 marks the final “one-year anniversary” when I begged the emergency room doctor to release my mama from the anguish of Alzheimer’s when her heart stopped. June 30 was Mom’s new birthday in heaven. My greatest loss was heaven’s richest gain. Despite standing on God’s promises and being fully equipped in His spiritual armor, then AND now, the sadness over not being able to hear her voice, pick up the phone to call her, take her to church, and see her eyes sparkle and her smile penetrate my heart has made this one of the hardest journeys of my life, except when I am reminded that God’s grace alone carried me through it all. Jesus’ yoke is easy, and it is equipped and ready for Him to carry all or some of the burden(s) we carry (Matthew 11:30).

Part of me wants to just hunker down with a box of tissues and reside in my loss. But I will strive to release it. God carried our family through the battlefield of this disease as our “Commander-in-Chief,” and His victory is where ultimate healing resides. I will slumber in His arms and allow His yoke to guide me through the next couple of weeks. And He will graciously remind me that He gave Mom to me for a time to be my life partner and angel on earth. June 30 marks a grace-filled day.

For the Glen Campbell family, they parlayed the ugly diagnosis of Alzheimer’s into a touching memoir of his life through his new album, Adiós. Family members and family friends coached Glen through the creation of a tender and poignant farewell for his pinnacle career. He couldn’t remember the lyrics very well, but with the loving assistance of loved ones, his tender voice could one last time grace the recording studio. Adiós is beyond a “swan song.” It is a love gift to his fans—as well as those touched by Alzheimer’s—and filled with the magic of collateral beauty.

See the following links to stories about Adiós:

http://www.glencampbell.com

http://newsok.com/article/5552217

http://wbgo.org/post/help-friends-and-family-glen-campbell-says-adi-s#stream/0

ENTER NOW:  CONTEST RULES FOR CHANCES TO WIN GLEN CAMPBELL’S NEW Adiós CD:

Cheryl Crofoot Knapp has paid for prizes, sales tax, and shipping. Winners’ names may be made public on www.cherylcrofootknapp.com and/or Facebook.  NO PURCHASE NECESSARY. Three winners will be selected in a random drawing. Each winner will receive one (1) CD of Adiós by Glen Campbell. No exchanges or cash awards. However, a winner may substitute the prize for a paperback copy of UNDEFEATED INNOCENCE. This giveaway started June 11, 2017, and ends June 30, 2017 11:59 PM PDT. Winners will be determined in a random drawing to be conducted on July 17, 2017.

HOW TO ENTER–Each contestant is eligible to enter one (1) time in one or all of the four chances stated below. Each contestant is thus eligible for up to four chances to win one of three Adiós CDs. Ways to enter:

1. Write a verified purchase review for publication on Amazon.com of the book, UNDEFEATED INNOCENCE. Amazon.com requires purchase of UNDEFEATED INNOCENCE. Family members of Cheryl Crofoot Knapp are not eligible by Amazon.com to write and publish on Amazon.com a verified purchase review. Go to Amazon.com, search for UNDEFEATED INNOCENCE, and scroll down in order to enter a review.

2. Write a review for publication on www.cherylcrofootknapp.com of UNDEFEATED INNOCENCE. Contestant must have read the book. All contestants are eligible. Submit review for inclusion by email (cheryl@cherylcrofootknapp.com).

3. “LIKE” the Facebook page for “Cheryl Crofoot Knapp – Author” at https://www.facebook.com/cherylcrofootknapp/. All contestants who previously chose to “LIKE” the Facebook page for “Cheryl Crofoot Knapp – Author” are automatically entered in the contest.

4. Become an official confirmed  “subscriber” on www.cherylcrofootknapp.com. Enter your first and last name and your email address in the sidebar on the right-hand side of the website. When you receive a subscriber email, confirm as directed and send. Cheryl Crofoot Knapp will not sell or exchange emails or subscriber list. All contestants who previously subscribed to www.cherylcrofootknapp.com are automatically entered in the contest.

Mother’s Day 2017, the first one without my sweet mama, was a day that appeared on my dread list ever since June 30, 2016. I was afraid that my emotions would be unable to cope and that collateral damage would be parlayed to my amazing adult sons. In “Cheryl-ese,” I didn’t want to short-change them. I love being their mom, ever since the days I first held each of them. They always deserve my best. But my mama can no longer hold me, and I was, well, scared. I loved, and I grieved. During mid-winter, the grief of my loss consumed me for extended moments–not days, not weeks–but the moments were painful and the world felt broken. How could I walk through the storm of Mother’s Day without the one who first held me? The attached video answers that question.

On March 27, 2017, UNDEFEATED INNOCENCE was first published. The first person who received a copy, even before I got one, was my beautiful niece/daughter Allison. She and I have always been incredibly connected since I first held her. Her grandma was very special to her, and my mom loved her so very deeply. Allison was Mom’s angel.

When Allison received the familiar Amazon box, she called me so we could share the moment together. She shot video of her loving hands holding and opening the book, page by page. As I held back the tears, my love for Mom and for Allison poured out. And I began to experience the heavy weight of grief lifting from my innermost being.

A few weeks later, Pastor Tad asked me to speak from the pulpit on Mother’s Day. The stirring in my spirit was not only the delight in being asked, but it reflected the next phase of releasing the grief that still held captive many moments of my life. Pastor was serving out a portion of God’s purpose to restore me and rescue me from the storm. Pastor read the book and believes in its healing message and asked me if I would speak on Mother’s Day. Many people are hurting on Mother’s Day–the loss of a mom, a daughter, a spouse, or a child, or an inability to have a child, have created a storm of isolation and despair. We knew a message of God’s hope in the storm would be God’s choice for Mother’s Day.

I’ve attached a video of what I shared in church on this first Mother’s Day. I probably learned the biggest lesson of all–that leaning into Jesus and away from grief is honoring for God and my parents and will ultimately lead to release from the grief. I not only “made it” through Mother’s Day, but my spirit was restored and renewed. The message you will hear is one of encouragement and hope in the storms. A hurricane is made of four components: eye, eye wall, spiral rainbands, and the shore. Using an analogy of a hurricane’s composition, I demonstrate that Jesus himself is there to hold back the storm’s harshest fury.

I also teach that restoration to joy in the chaos of Alzheimer’s is only possible when we have peace WITH God, ourselves, others, and the disease itself. God doesn’t promise to give us peace FROM the storms, but He does promise to meet us IN the storm.

June 30, 2017, may be a difficult day for me. But with God’s grace, as I undoubtedly relive the last day I held and kissed the most special woman in my life, the yoke of Jesus will bridle and guide me back to peace. If I reside in the eye, Jesus will protect me from the full fury of sorrow, and He will gently lead me back through the rainbands to the peace of the shore.

It’s a guaranteed promise. One of the worship songs for Mother’s Day include the lyrics, “Troubles vanish. Hearts are mended.”

On this Mother’s Day, my troubles vanished and my heart was mended. May God’s promise to protect us and lead us out of ANY storm encourage you.

Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the others. (Philippians 2:3-4)

The attached video was posted on Facebook, and I stumbled on it yesterday. Professional and non-professional caregivers truly make a difference in the lives of patients and their families when they humbly value others above themselves.  The man in the video suffered a major stroke and wasn’t expected to live or walk. I guarantee that if you watch the entire short video, you will laugh AND cry.

This ought to be going on in nursing homes and rehab centers around the world! To see John’s face light up in his successes says it all!! Nurses truly make a difference in patients’ lives–and for the patients’ families.

We had a very special charge nurse named Annette who advocated for my mom in powerful ways during Mom’s painful final days. I saw Annette a few weeks ago and gave her a copy of UNDEFEATED INNOCENCE. I thanked her again for her vigilant care for Mom, and for coming to the emergency room shortly after my mama passed just to make sure I was doing okay. We cried on June 30, 2016, we cried when I gave her a copy of the book, and I cried when I watched this video. It’s incredibly beautiful and tender–dance therapy at a magnificent level.

A study conducted in 2014 determined that Alzheimer’s patients feel emotions far longer than they can remember the event that triggered the emotion. The study was co-authored by Edmarie Guzmán-Vélez, a doctoral student in clinical psychology, and conducted by University of Iowa researchers where individuals with and without a diagnosis of Alzheimer’s were shown movie clips that prompted responses of either sadness or happiness. The results indicated that not only did the emotions of those with Alzheimer’s last longer than their ability to recall what triggered the emotion (some didn’t even remember thirty minutes later ever having seen the movie), the emotion of sadness lasted longer than happiness. The link to the study appears below.

John Riehl, “Alzheimer’s Patients Can Still Feel the Emotion Long After the Memories Have Vanished” (September 24, 2014). http://now.uiowa.edu/2014/09/alzheimers-patients-can-still-feel-emotion-long-after-memories-have-vanished

For awhile, my mom loved to participate in making arts and crafts with the other seniors at her care facility. She took pride in her accomplishments, and so did we. One of the crafts they were coached to make were cute snowmen made out of tin cans and socks. After church when my husband and I brought her back to assisted living, she walked us over to where the snowmen were displayed. She methodically reviewed each and every snowman until she could find the one she had created. Her smile beamed, but it could only give us a glimpse as to how her soul felt. She had lost so much memory and ability to concentrate. Yet she made a beautiful snowman AND she could remember which one she made. We celebrated her success AND her memory moment.

During one arts and craft session, the seniors were encouraged to make a thank you card and give it to someone special. Ever since she gave the unsigned card to me, it has remained delicately placed on my refrigerator. I looked at it a few days ago and remembered how she shyly explained why she wanted to give it to me and that “it wasn’t much.” Little could she comprehend that the small, multi-colored thank you note was and still is a treasured memory. She didn’t think it was enough, but it was EVERYTHING to me. She made it with her own hands with me in mind. We celebrated her accomplishment with hugs and kisses, I told her how proud of her I was, and that it was an honor and blessing to be able to be her life manager.

It took us weeks to find a radio that was like the old days–no CD and no bells and whistles. All we wanted was an AM/FM radio with an antenna, an on/off switch, and volume control. When we finally found one, she was grateful for music again. I plugged it in, found the “oldies” station, and “Somewhere Over the Rainbow” was the first song that played. We sang out little hearts out together. She remembered the music and the words.

What do snowman, thank you notes, and radio music have in common? They allow people with Alzheimer’s, or stroke victims like John, to feel success regardless of their limited abilities. It returns them to joy. I called Mom every night and asked her about her day. She often said, “It was a great day,” even though she couldn’t remember what she did. But she still felt the happiness that entered her soul that day.

I’m glad that God celebrates in our every success, despite our grossly limited abilities. I’m glad He doesn’t grade on a curve. And I’m glad He called me to give up nearly everything in order to be the hands and feet for my mom.

I learned a lot being Mama’s primary caregiver, particularly that my attitude matters more than my performance. She wouldn’t remember what I did or didn’t do. But she could remember how she felt about whatever it was I did. Just like John.

Because I Caregave
I miss the softness of your hands, because I held them.
I miss the softness of your voice, because I listened.
I miss the softness of your lips, because I kissed them.
I miss the softness of your eyes, because I gazed into them.
I miss the softness of your heart, because I knew it.
I miss the softness of your soul, because I felt it.
I miss the softness of your tears, because I wiped them away.
I miss the softness of your smile, because we laughed.
I miss the softness of your skin, because I stroked your face.
I miss the softness of your hugs, because we shared them.
I miss the softness of your love, because I shared it.

Glen Campbell was an icon in our family and a pleasant memory as I grew up. My dad loved country music, played banjo and a variety of guitars, and did a lot of  pickin’ and grinnin’ with as many bands as would have him. I must honestly admit that I wasn’t exactly a fan of country music at the time, and I covered my ears a lot. My preference was Herman’s Hermits and Gary Lewis, not Merle Haggard, Hank Williams, or Conway Twitty. But I could see the joy that music brought into my dad’s life–so much so that he even played a guitar in his pup tent while he fought in the Korean War.

During ninth grade, I announced to my parents that I wanted a guitar for Christmas. I enjoyed playing piano and drums, but I wanted a guitar. It melted my father’s heart to know that his baby girl wanted to play just like him. He lovingly selected a beautiful acoustic guitar with nylon strings. When I found it underneath the Christmas tree, I grabbed it, ran down the hallway, and barricaded myself in my bedroom all day to learn some basic chords. I remember the pride I felt when I learned my first two songs: “Leavin’ on a Jet Plane” and “All Together.” Okay, yes, I was born in 1958 and loved the music of the sixties! Singing has never been a talent of mine, but I serenaded my parents and sister to reprise after reprise of those songs all day long. I was now hooked on pickin’ and grinnin’, too. Like Ashley and Glen according to the video, my dad taught me how to not be afraid of the storms and how to play guitar, even when it wasn’t easy.

Dad loved to have garage parties that included his musician friends, and he occasionally asked me to join in with them. The most memorable time was when I got to play “Crazy Cat’s” drum set with the band. “Proud Mary” never sounded so good! I enjoyed playing so very much, but the best part was seeing Dad’s huge grin flashing my direction as he watched me play.

Glen Campbell and Roger Miller songs dared me to foray into country music. “Loving” country music didn’t start until about a decade ago, but the memories it created for my dad and me remain a rare treasure. He loved to play”Gentle on My Mind,” and I tried to join him on the piano.

For my 50th birthday, my husband (we weren’t married yet) set up a surprise visit to Arkansas so we could spend the special occasion with my parents. On the morning of my actual birthday, the three of them conspired to woo me onto the back deck, escort me to a green plastic patio chair, and advise me to sit down. Mom and Dad played their ukuleles and serenaded me with the most memorable happy birthday song ever sung. The next day, it was time to go to the Marion County Senior Center for dinner and music. Anyone who wanted to jam were invited onstage. Dad and I went forward, along with about five other people. Dad played his vintage Epiphone that we lovingly call “Big Red,” and I played his acoustic guitar. “King of the Road” and “Gentle on My Mind” were two songs we played together. While the group played “Great is Thy Faithfulness,” I looked over at my dad. He struggled to play and eventually stopped. At the time, I thought he was once again soaking up the memory of playing music together with his baby girl. The reality was that he had forgotten how to play the chords. Our family tried to be in denial, but it surely was a turning point in recognizing that my dad had Alzheimer’s.

Music undoubtedly helped Dad keep his memory longer. Music is one of the only things that utilizes both sides of the brain at the same time. As Ashley Campbell talks about in the video clip, music helped her father engage. Both Glen and my dad could remember music longer than lyrics, and they could remember music longer than knowing where they were or why they were there. I anguished over the reality of the disease in my dad, and I anguished when I saw Glen Campbell receive a lifetime achievement award in country music. He could play the music and sing some of the lyrics, but he couldn’t remember where he was or why he was there. Seeing Glen Campbell reminded me of my dad’s struggles. The familiarity was brutal.

My pastor send me a text yesterday with the link to Ashley’s song about her dad. I sobbed as I watched it. I tried unsuccessfully to get the sobs under control when one of the attorneys I work with called me. She asked how I was doing. I replied, “Well, I’m sobbing at the moment.” We laughed, but I cried some more. Glen taught his daughter, and Dad taught me. Like Ashley, I saw the moment when dad could no longer play because “it” (what I call Alzheimer’s) had stolen it from him.

The video showing Ashley Campbell performing her song “Remembering” can be viewed at www.youtube.com/watch?v=cUoecEA4l3k. The segment appeared on RFD-TV. Lyrics written by Ashley Campbell.

Some of the lyrics reveal how she told her father she would take care of him and that, when his memory failed, she’d remember for him.

That’s what caregiving for someone we love with Alzheimer’s is all about. During my 50th birthday week with my parents, my dad and I had some alone time. We sat side by side in lawn chairs and talked about life. Dad’s words were few and they didn’t always make sense. But we talked, and I helped him with remembering. With my mom, she would get so very frustrated when she couldn’t remember how to do something, like paying bills or doing laundry. I literally told her, “It’s okay, Mama. I’ll remember for you.”

Ashley Campbell, thank you for your beautiful song that touches the community of Alzheimer’s. This song touches me deeply. My daddy taught me how to play guitar and enjoy country music. We shared tender moments together because of it. And my mama, who used to carry the weight when life got heavy for me, shared her tender life with me. She was the first one to hold me, and I was the last one to hold her. For both my Mom and Dad, I promised them I would be their life managers and their memory.  And I kept the promise until Alzheimer’s was defeated in both of them.

Collateral beauty in “remembering.” Praising God that He allowed me to do that for the two most special people in my life.

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. (1 Peter 1:3-7 NIV)

One month ago today, on June 30, 2016, the angel who God sent to earth to be my mom, my friend, my biggest fan, my protector, and defender was set free to return to her eternal home. Alzheimer’s was defeated, and her fears were released. She is now admitted into eternal grace.

Mom experienced many physical struggles during her final week, but remembered me until the very end. She had already been in the hospital for three weeks for evaluation. While there, she fell, broke her hip and leg, had surgery, and developed blood clots that preceded her heart attack just hours before she passed.

As Mom struggled on her final morning, one of the nurses on the medical floor told her, “We’ve talked to Cheryl, and she’ll be here soon.” The nurse later told me that Mom immediately relaxed, an acknowledgment that Mom knew I was coming and remembered I was someone special in her life. A short while later, she was raced to the Emergency Room, and I raced like Jeff Gordon to meander through the twenty-five miles to the hospital.

The adage is true that God is never early, never late, and always on time. He got me to the emergency room not a moment early, not a moment late, and just in time. I choose to believe that God told Mom when I arrived at the ER. 

I was quickly escorted to the family conference room to talk with the doctor. During our two-minute conversation, a very intense nurse came into the room twice, needing the doctor’s immediate attention regarding my mom. It was during these moments just after I arrived, unbeknownst to me, that Mom’s heart had beaten for the very last time. Dr. Jackson asked me for a family directive, just in case, and I pleaded with the doctor, through the torrents of my salty tears, that “she’s been through enough, and please, I beg you, please let her go.”

Ninety seconds later, I was escorted in the direction of her ER room as nurses and doctors pulled the life-saving lines and tubes from her body. That’s when I was first told that her heart had stopped. My feet refused to move just short of the entrance to her room. I told the nurse, “Whoa, wait just a second. I’ve never been with a deceased person before.” He gave me a gentle smile and said, “You’ll be fine. We’ll walk you through it together.” Moments later, I was witness to her spirit soaring into the arms of Jesus.

During the last four weeks without my mom, I learned something about grieving. Panic attacks and post-traumatic stress disorder (PTSD) can occur as part of the grief process, particularly for those who have been arduous caregivers and for those who strive to perfectly perform the tasks of being the Chief Executive Officer of the estate. Sounds like the job description I diligently fulfilled.

My mom was my best friend for fifty-eight years, and she will always remain my best friend through eternity. Yesterday, the last family members said goodbye. Probate is nearly done. Photos have been tearfully cherished. For moments today, life felt seemingly still.

But for other moments this week, I found myself experiencing panic attacks for two of the last three mornings (I’m not prone to experiencing them). Took me a couple of days to recognize them as such, and then I did some research. 

When we caregive before death and then become the CEO after death to handle everything on behalf of our loved one (like planning the funeral and writing the obituary, and handling probate, etc.), the busyness “defers” the grief which can then manifest in panic attacks and even PTSD, especially for people like me who hold the winning lottery ticket for perfectionism.

My thoughts about panic attacks or PTSD? Like Dr. Seuss, “I do not like them here or there, I do not like them anywhere.”

I extend a special love, mercy, and grace today to others like me who still cry at flashback memories or who stroll through the card section at Hobby Lobby wanting desperately to buy one more card for their loved one, simply because we miss our loved one so very much. This is the most significant and hardest loss of my life, even harder than when my daddy died of Alzheimer’s, too.

Despite standing on God’s promises and equipped in His spiritual armor, my extreme sadness and pain of not hearing her voice, not being able to pick up the phone to call her, not taking her to church tomorrow, and not seeing her eyes sparkle and her smile penetrate my heart is the hardest journey of my life. I am physically alone right now, and sometimes crying is the only thing I know how to do.

Please don’t judge me, nor dismiss my anguish. It is deep, and it is real. As someone who is grieving, support me in my grief. Let me cry, let me laugh, let me take pause to reflect on the memories of the life partner God gave me in my mom. Let me be held by my angel just a little longer. Let me tell you about my mama.

©2016 Regifted Grace Ministry LLC

Photo: ©2009 Picture Place and Barry Howell, photographer