Mama, This One’s For You

How the Blue Ridge Mountains Christian Writers Conference 2018 Changed Me

Come with me by yourselves to a quiet place and get some rest,” Jesus said (Mark 6:31 NIV). For the last two years, my annual quiet place to get some rest has been at the Blue Ridge Mountains Christian Writers Conference. This year was more powerful than the last in many respects, and I can only give you a bird’s eye view of how it changed me.

(DiAnn Mills, Cheryl Crofoot Knapp, and Edie Melson; photo by Mary Denman, Photographer)

Why do I need to find a place for quiet and rest? First, I’m still working through the loss of my parents to Alzheimer’s and learning how to recover from that “thing” called caregiving, which was filled with collateral beauty, but I wouldn’t call it a place for quiet and rest. I’m still weary, I still grieve, and I still need rest. Second, my passion to stretch my arms out wide to encourage caregivers through writing and speaking gained legs at this year’s conference. (more…)

Mama, I’m So Sorry . . . .

How an Alzheimer’s Simulator Let Me Walk in My Mama’s Shoes

 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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LINENS AND CHINA AND GOBLETS, OH MY!! — How a formal dinner party brought me to my knees

Hosting a formal dinner party at the ripe old age of 19 shouldn’t be a big deal, right?

I returned home after my freshman year of college to spend the summer with family, friends, and a job. My parents loved weekend camping and told me in advance when they’d be gone. So on a weekend when I knew I’d be “Home Alone,” I decided to throw a formal dinner party. Not just any party, but a formal dinner party for my closest friends.

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“I’M SO MAD I COULD NEVER EVER FORGIVE!”

How Can I Forgive When I Don't Want To?!?

 

Have you ever felt that way? Or felt that you HAVE to forgive and then you feel guilty because you can’t? Or felt guilty because you thought you forgave and then the pain of the offenses crept back in and forgiveness flew out the window?

Raw emotions seep to the surface when a family member becomes responsible for the care of another, especially when that family is impacted by Alzheimer’s. Old family wounds raise up their ugly heads, and fractured relationships become chasms filled with harsh words and unforgiveness.

(more…)

My husband Chuck and I have the pleasure of once again serving on-air during the KCMH-FM annual Sharathon fundraising drive. This year’s theme is “THRIVE,” based on 1 Chronicles 4:10.

KCMH-FM is a local Christian radio station committed to serve the Lord’s people, to help strengthen each family in our listening audience, and to lead people into a more intimate relationship with Jesus Christ. KCMH is a non-commercial, non-profit, independent and interdenominational radio station. We are a Faith ministry and operate with tax deductible contributions from our listeners. KCMH is entirely listener supported. Your prayers and financial support are tools God uses to broadcast His message of love, hope and salvation to the Ozarks and beyond.

I’ll even be giving away a couple copies of my faith-based book on caregiving, Undefeated Innocence: How God Helped My Parents and Me Navigate the Alzheimer’s Journey.

Help us keep Christian radio strong in the Ozarks.

For a Sharathon pledge form, click here.

To listen online, click here.

 

 

Date: April 5, 2018—April 7, 2018
Event: KCMH-FM 2018 Sharathon: "THRIVE"
Topic: THRIVE
Sponsor: KCMH Radio, 126 South Church Street, Mountain Home, AR 72653
Public: Public

These Are a Few of My Scariest Things

The day I took on my fears in an MRI machine

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!

(more…)

SO CRIES MY HEART: Obedience versus Sacrifice

Finding the collateral beauty in caregiving

I read their gut-wrenching words. I feel their anguish. My heart races, I clench my fists, and I fight back my tears. I walked in their shoes, yet I sit clueless as to how I should take their agony away. I despise the word should because it’s a word of shame. But that’s how I feel. I feel ashamed that I can’t find words to help them. So goes another morning on an Alzheimer’s social media support group.

(more…)

From Grief to Grace–And the Circle of Life

A Review of UNDEFEATED INNOCENCE

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.

 

 

Chuck Knapp and author Cheryl Crofoot Knapp discuss how faith plays a role in caregiving for a loved one with Alzheimer’s. Where is God in Alzheimer’s? Listen to the discussion scheduled to air online on Tuesday, January 16, 2018, at 5:00 p.m. Take an hour to laugh and learn with us.

Date: January 16, 2018
Time: 5:00 p.m. (central)
Event: Internet Radio Interview: Christian Devotions SPEAK UP! with Host Scott McCausey
Topic: Where is God in Alzheimer's?
Public: Public

The Mruk Family Education Center on Aging holds a monthly Alzheimer’s support group meeting on the 4th Thursday of each month at 2:00 p.m.

On March 22, 2018, I’ll be speaking to the group and answering questions as it relates to the fear, guilt, grief and disappointments of Alzheimer’s.

Date: March 22, 2018
Time: 2:00-3:00 p.m.
Event: Alzheimer's Support Group: Discussion of Fear, Guilt, Grief, and Disappointments
Topic: Fears, Grief and Disappointments in Alzheimer's
Sponsor: Mruk Family Education Center on Aging
Venue: Mruk Family Education Center on Aging
(870) 508-3880
Location: 624 Hospital Drive
Mountain Home, Arkansas
Public: Public
Registration: Click here to register.