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/​

 

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

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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…)

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!

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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.

 

 

The University of Arkansas for Medical Sciences in Little Rock, AR has developed an opportunity for others to get a sense of what a person experiences with dementia, including Alzheimer’s. They created a simulator that utilizes goggles, shoe inserts, noise, and gloves. In my opinion, no simulator can mimic the fear, anger, and anxiety of the disease; but I believe it gives great insights.

I have the opportunity to experience the simulator on Friday, November 17, 2017. Attached is a link to the feature story aired by KTHV-11 (CBS affiliate in Little Rock, Arkansas) about the simulator. I’ll post my personal experience in a few days.

 

Date: November 17, 2017
Time: 1:00 p.m.
Event: Alzheimer's Simulator: Walking in My Mom's Footsteps (click here for a link to a preview)
Topic: Alzheimer's
Sponsor: The University of Arkansas for Medical Sciences in Little Rock, AR
Venue: The University of Arkansas for Medical Sciences in Little Rock, AR
Location: Donald C. Reynolds Institute on Aging
Hot Springs, Arkansas

CARE TALKS: Caregiving the Caregiver

Honoring the True Heroes

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!

 

 

FIRST BIRTHDAY IN PARADISE (including excerpts from Chapter 11 of UNDEFEATED INNOCENCE)

REMINDER: Enter Contest for Chance to Win Glen Campbell's New CD ADIOS--Ends June 30, 2017

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? (more…)

When Alzheimer’s Bids Adieu: Glen Campbell Says Goodbye in Song

Enter Contest to Win A Free CD of His Farewell Album

 

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”. (more…)

VIDEO: Leaning Away from Grief and Finding Peace in the Storm

Romans 15:13--Overflowing with Hope

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.

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Click on “KTHV-11” below to see the full interview.

Craig O’Neill, lead news anchor of KTHV-11 in Little Rock, Arkansas, graciously interviewed me regarding the Alzheimer’s journey of losing both my parents to the disease and publication of my new book, UNDEFEATED INNOCENCE. We discussed what it was like to lose both parents to Alzheimer’s and the necessity for passionate patience in caregiving for someone with Alzheimer’s. I spent several hours at the station with Craig and the rest of the news team, particularly Denise, Dawn, and Ed. I met producers, directors, and reporters. What touched me the most was the genuine compassion they all showed not only to me, but as they talked of others they knew who were or are caregivers, or as they shared their own painful experiences with losing loved ones to Alzheimer’s. KTHV-11’s tag line is, “This is Home.” That’s how I felt from the moment I walked in the door. Thanks, KTHV!

Alzheimer’s Disease can be a complicated, gut-wrenching journey with those we love. But if you are a caregiver looking for encouragement, it is found in God’s grace and in knowing that you do not walk this journey alone.

Buy the Book

Date: May 6, 2017
Time: 6:25-6:29 a.m.
Appearance: TV Interview: KTHV-11 with Craig O’Neill
Outlet: KTHV-11
Location: Little Rock, Arkansas
Format: Television

UNDEFEATED INNOCENCE is available at online bookstores, including Amazon, Barnes and Noble, and WestBow Press.