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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