Truth for the Person with Dementia
When Mom entered the “Group Home,” where she would reside for nearly 2 years in late-stage Alzheimer’s, she was agitated, restless and cried continuously to go home.
I brought crochet yarn of every color on each visit in an attempt to keep her busy. The only hobby she had left was that Mom could still crochet a single chain into many circles that eventually became a potholder or heat-pad.
Though she had all but forgotten how to crochet except for this basic chain stitch, she could still make gorgeous, round doilies for all of her friends and family. It was a struggle for new ideas to keep Mom feeling happy and loved and cheerfully pleasant. “Cheerful and Pleasant “ is not an easy mood to have when you’re in late-stage Alzheimer’s.
On a whim in the pharmacy one day, I saw the sweetest serenity waterfall. A small, table-top waterfall where water pushed up over a rock formations then tumbled down a river bed, winding through a rustic desert scene filled with cactus and things familiar to Mom. I knew she’d love it. She’d lived in Arizona and the desert for 60 years and loved the landscape. I could hardly wait for her to see it on my visit the next day.
Mom giggled like an eager child and clapped her hands together beneath her chin as I readied the serenity waterfall for operation, adding batteries and filling the concealed tank with water. When we turned it on, she squealed in delight and sat mesmerized in front of it for an hour.
It seemed to soothe her and as I left that day, I reminded one of the aides to replace the batteries often so it would continue running until I returned the next day. I preferred the purchase of batteries every day than an increase in Mom’s dose of anti-depressants which I knew would be her doctor’s next suggestion.
==> Progress meant: Keep her occupied <==
When I arrived the following day, Mom sat quietly on the side of the bed. Her serenity waterfall silent on a tabletop nearby. “Mom,” I said softly as I entered the room and placed a hand on her shoulder. “Did the batteries run down– your waterfall isn’t flowing?” I smiled at her before I lifted her chin, an attempt to assess her mood.
Mom frowned and pulled away. It was obvious she had no clue what I was talking about and not entirely certain who I was. Some days I could see it in her eyes, she still knew me. Other days– not so much.
That blank stare that I’d never seen until Alzheimer’s invaded my mom’s space, but I knew it now. I could recognize that Alzheimer’s stare if I saw it on a stranger. It’s a cold, blank “look” with hollow eyes that haunt you. You never forget them.
Mom knew I was someone important to her, but the title “daughter” didn’t ring a bell. “Your waterfall,” I urged her back to the moment as I crossed the room and lifted the waterfall off the side table. “I bet we need to change the batteries.”
“Give me that! It’s mine.” Mom was on her feet demanding and pulling the waterfall from my hands. “If you came to visit me once in awhile, you would have seen this before. But it’s not yours, it’s mine.” She was obviously cranky today. The bad days came and went. I knew that and accepted it– but her words stung all the same. She had no memory of my visit the day before, just as she could not remember that I had brought the scenic waterfall as a gift.
Before I could finish the thought, Mom dissolved into her quiet, sweet self again.
<== Her Story ==>
“It’s a real find, don’t you think?” Mom’s eyes went wide and excited, like a child tattling a secret. “I’m certain it’s an antique.” She was breathless at the thought.
Now I frowned. “An antique?” I’d purchased the waterfall at the pharmacy the day before and I’d clearly told Mom that. “What do you mean, an antique?”
Mom crafted her words in the serene tone of an ancestral storyteller. ‘She had gone for a walk the evening before,’ she said. ‘She wandered the desert floor behind the “Group Home.” (The “Group Home” is on a tract of land alongside 250 other homes. The surrounding desert all but erased by civilization. All exits from the home have automatic dead bolts which can only be released by the staff. Patients are allowed on a walkway and patio into the back yard, but there are no exits from that area to the outside world.)
“You went outside last night?” I was surprised she’d found a door ajar to go outside alone, even if only in the back yard.
She was industrious, I knew that. We’d already suffered through one incident when Mom had gotten lost. We thought she was lost, Mom thought she was digging nice black dirt for a potted plant behind one of the two tin storage sheds sitting flush with a fence. We never did figure out quite how she flattened herself between the fence and the shed. It took an hour to find her on that expedition, so she was certainly capable of escape.
“Did someone go with you? Did they take you for a walk? Is that what you mean?” I waited, wondering if Mom had actually found some way to escape the security of the back yard.
“No,” she interrupted my thoughts. “I was alone.”
I swallowed the knot in my throat and made a mental note to talk to the staff as soon as she’d finished her story. “You went out alone, out the gate, and–“
“Yes, I went out alone and it was dark and I went out the gate too, and I was walking along and I almost stumbled. Almost fell right on my face.”
I could feel my heart hammering faster, could this be true?
“Actually, I tripped,” Mom went on, “Just stubbed my toe and tripped and almost fell down. Then I looked down and there it was. All the desert and cactus and stones and this one little corner sticking up and I bent down and picked and dug that hard dirt and there it was.”
“There what was, Mom?” Apprehensive now, but eager to hear the end of this story. I waited for her to continue.
“Well, I thought it was a rock, just jutting out of the desert,” Mom said, obviously building my interest now that she had my rapt attention.
“Okay, okay, I thought it was a rock sticking out of the ground. I bent down and pried and pried but couldn’t get it out of the ground. Finally, I found a sharp stick and pried until it was loose enough to get out of the sand. And there it was! Voila! Buried in the sand. I still can’t believe I found it.”
“Found what, Mom?” Now she’d lost me. “What was buried under the ground? And how did you get out of the yard? Who was with you? I know they would not let you go walking alone, day or night.”
“This!” Mom held up the serenity waterfall. “I found it in the desert. Buried in the desert. It has to be an
antique, an ancient relic from the Indian tribes who lived in the desert. Such a beautiful thing, the red rocks, the little cactus, the water running–”
==> The Truth <==
“Mom,” I edged toward her. “I bought that for you yesterday and brought it here, remember? We put batteries in it and watched the water flow. I don’t think they had batteries all those years ago when the Indians lived on this ground.”
“Oh.” Mom sat down hard on the side of the bed with her mouth pulled down in a frown. She balanced the “antique waterfall” in her lap. “I wondered where it came from when I first saw it this morning. You weren’t here when I woke up and saw it, so how would I know you brought it here. You didn’t visit me yesterday. I don’t remember that. If you had been here, I would remember. You didn’t come yesterday.” She paused in silence for a moment.
==> Mom’s Truth <==
I felt guilty for denying her wild story of the night before, denying what was clearly “her” truth.
Then, she clapped her hands together, and was excited again–talking again. ” –then I remembered,” she was certain, ” I remembered how I found it last night.” She smiled at me. ” You know, it was so dark, I’m surprised I didn’t fall down when I tripped over it. I was walking for hours. It was such a nice sunset and then it got darker and I just kept walking and then I tripped on something. I wasn’t sure what it was at first. But I stopped and took a stick and worked the dirt away until I could lift it out. ” Mom looked at me and smiled, so pleased with her find from the desert floor.
“I really believe it must be an antique. See how old it looks,” she dusted it with the corner of her shirt. “It looks so rugged and beaten-up and it was buried so deep like that–”
“It could be, Mom. I’ll have to check into that.” I admired the wonderful piece of art that she’d found in the desert.
“Wonderful! I’m just certain it’s an antique.” She was happy now.
For the remainder of her time spent in the “Group Home,” Mom told everyone about her trek into the dark desert that night and the beautiful antique waterfall she found. It sat on her dresser and became a conversation piece for every visitor.
Alzheimer’s is much more than memory loss. I think that’s what makes it so difficult for the caregiver. The patient has many behavioral problems besides Memory Loss; confusion, fatigue, forgetfulness, personality changes, disorientation, anger, rage, argumentative, and the list goes on and on. If the person with Alzheimer’s has an erroneous belief or memory, arguing or attempting to correct their belief is not the solution.
They become angry and upset and still do not understand your perspective. It’s better to agree and allow them their own perceptions whether authentic or fiction. It’s difficult to do, I know, since most of us spend our entire lives as truth-tellers. But overall, what difference does it really make whether Mom found an antique waterfall on the desert floor or I brought one for her as a gift from the pharmacy.
It goes back to what I truly believe…
==> The person with Alzheimer’s does not need the truth, but does need your love and a feeling of security <==