The Dementia Dossier: Anatomical

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Mom at her walker. Me on my knee scooter. Warming up dinner in the microwave. Mom ate a corner of leftover omelet from the Original Pancake House. I ate leftover sliced pork roast stuffed with garlic and green olives, from dinner Solange and Ana brought the night before. “I called Steve,” I chatted with mom about our neighbor and church choir member. “He spent eight miserable days in the hospital with kidney stones. He said it was a ‘bad deal,’ a ‘bad deal.’” “Oh, that’s terrible,” Mom said. “Did they take his gall bladder out?” Me: “No, mom, he had kidney stones, not gall stones.” Mom: “Oh. Where were his kidney stones?” Me: “Um, his kidney stones were in his kidneys.” I remember, as a teenager, seeing the red flashing lights from my bedroom window. Voices echoed in the hall. I opened my bedroom door and stood, staring, in the door frame. Paramedics bumped their way down the stairs with my dad on a stretcher. He was moaning. I was scared. I didn’t know what kidney stones were. Poor Dad. Poor Steve. Poor Mom.

 

(Image by Ely Penner from Pixabay)

The Dementia Dossier: Half-Pipe

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ASPEN, COLORADO - JANUARY 28: Alex Ferreira of the USA reacts after his final run in the Men's Ski SuperPipe on day 3 of the X Games Aspen 2024 on January 28, 2024 in Aspen, Colorado. (Photo by Jamie Squire/Getty Images)

The best of three runs. That would win the gold medal in Cortina. After a long day and evening of remote work upstairs, I rode the stair lift down at 7:30 p.m. (I still can’t walk) to visit with Mom and watch some of the last 2026 Winter Olympics events. For all the speed of speed skating, the grace of ice dancing, and violence of ice hockey, the free-ski half-pipe held me riveted. I had a hard time getting my brain (and imagining getting my body) around the speed, power, height, artistry, twists and flips, and backward landings of the free-ski half-pipe skiers. Mom and I watched together, while she pulled the needle and yarn through her latest needlepoint. She muted the commercials, and I asked her the routine questions of our daily visits: “Have you heard from Jeanette today?” “What did you have for lunch?” “Did you play Go Fish with Rochele?” We watched the first run: nearly every skier fell. Then the second run. “I’d like to watch the 9:00 news,” Mom said at 8:30. I suggested we see where the event was at when 9:00 came. The third and last run. Incredible runs and scores. Three skiers to go. Who would win the gold? “It’s 9:00,” Mom pointed out, fingering the remote. “Can’t we watch the last runs to see who wins the gold medal?” I asked, incredulous. She looked crushed and disappointed at my question. “I’ll do whatever you want, dear,” she choked. I suddenly felt like my late dad, prisoner for three years to his diabetic paralysis and to Mom’s unilateral wielding of the remote. “Enjoy the news,” I said flatly and stood. I rode away on my scooter and up the stair lift to my room to fume and watch Deep Space 9 reruns, while Mom got her third daily dose of murders, rapes, child porn arrests, immigration crackdowns, and fatal accidents—and the weather, again. So, who won the gold?

(Photo of gold medalist Alex Ferreira from nbcolympics.com, used under the Fair Use Doctrine.)

The Dementia Dossier: Companion Care

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The day after my hospital homecoming, the companion I hired came to the house for her first visit with Mom. They played Go Fish and looked at photo albums. They went for a drive. Three times a week Rochele has come. For two hours each visit. For all her resistance to the idea, Mom is thrilled with Rochele and her visits. “Help me fold my laundry,” she said one day. “Take me for a drive to my childhood neighborhood,” on another. I’ve added gas money to the budget. But I don’t care. Rochele is pleasant and patient. And Mom is delighted. She gets to see a friendly face three times a week, a face who wants only to please Mom in her whims. Rochele being Brazilian and speaking Portuguese is a bonus. Not that Mom remembers much Portuguese, from her (our) four years there. But the romantic connection to Brazil, for Mom, makes the companion connection perfect. I tremble at the Rochele-less days, when Mom becomes very lonely and pines for company. But Mom’s sister Karen came one day to visit, and they played old-time piano duets for an hour. And Megan comes, and holds Mom’s hand. And Carolyn comes, and does her cross-stitch. And Steven texted about the North Carolina snows. And Jen hairdresser came. And Madison delivers the mail every day with a cheery teenage hello and hug. And Brad leans the New York Times against the front door every morning. And Jeanette calls on the phone—every blessed day. God bless her.

(Pictured: homemade flowers made by Henry and Adelaide for their grandpa during his convalescence.)

The Dementia Dossier: Post-op 5 (Go Fish)

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My sweetheart brought some dinner to my room. New England clam chowder. Mmmm. And buttered toast. Ahhh. “Would it be okay if we invited your mom to come up and join us for dinner?” she asked. I guilty answered that I had just been about to suggest the very same thing—which in fact was true. The three of us enjoyed our soup and toast together. I have learned how impossible it is to eat lying on one’s back without spilling, especially anything liquid, no matter the precautions. A roll of paper towels next to my chair helps with my challenged eating. Feeling magnanimous, I suggested a few rounds of Go Fish. I think it’s Mom’s favorite game, partly because she can remember from day to day how to play it, and partly because she frequently wins. We played several rounds, and, true to form, she won most of them. My sweetheart looked at me fondly, and I recognized both a thank you and a good job for having invited Mom, for a few moments, into my convalescence.

(Photo from Amazon.com used under the fair use doctrine.)

The Dementia Dossier: Post-op 4 (No Visitors)

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I love the church choir members and director. I really do. But I asked Mom please to not invite the choir to my room to visit me. I didn’t want to feel like a zoo animal with a line of curiosity-seekers at my display cage. If they wanted to visit me, I reasoned, they could come during the week, or after church—just not as an extension of the convenience of already being at my house (Mom’s house) for choir practice. Mom seemed to understand, and I relaxed. While she was at church after choir practice, I rode the chair lift down the stairs for the first time, and hobbled exhaustedly around with a walker for a few minutes. There, on the third step, was the sign Mom had left for the choir members: No Visitors Upstairs Please. I guess I should not have been surprised. I had been as clear with Mom as I knew how, but dementia muddles and distorts everything, not to mention my own imperfect communication. My request for her not to invite the whole choir to visit me had turned into an injunction to stay away, to not trespass, into a declaration that Roger did not want to be seen. And the undementiaed choir took the sign at its word: no visitors, that day or since. How hard it is to strike a balance between wanting a little privacy and pushing people away. I seem to be better at the latter. I guess I got exactly what I asked for.

The Dementia Dossier: Post-op 3 (Good-night)

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Jeanette left after five post-op days. I felt mild terror at the withdrawal Mom would experience as the sudden cessation of Jeanette’s generous attention to her, with walks, drives, games, meals, and conversation. I feared Mom’s reaction to the sudden sensory deprivation, and of how Mom might look to me to fill it. Filled with anesthesia confusion and post-op pain, I retired early to bed, aided by both a sleeping pill and a pain pill. An hour later, I awoke to light flooding my bedroom. I turned over groggily, and in befuddlement saw Mom approaching my bed, her cane in one hand, and other raised in the sign for either hello or good-night, or both. I couldn’t hear for my ear plugs. I couldn’t speak for my CPAP mask. I couldn’t process for the foggy head, pain, and drugs. But I did croak out an unintelligible, “What…are…you…doing!?” She either registered my unhappiness, or had simply accomplished her purpose, for she turned and tottered out. Sleep was gone now, and I churned at the weirdness of the intrusion. The scene replayed itself the next morning, with Mom waking me with a knock on my closed door and staggering in to bid me a “Good morning!” I grunted something unpleasant, and she turned and left the room with a resigned, “Alright.” I whined to my sister. You can’t expect her to understand, or to remember. If you don’t want her to come into your room, you’ll have to put a sign on your door. A sign, really? Would STAY OUT!! do? Mom had never exhibited this intrusive behavior before. But I put up a sign that was hopefully both clear and kind: I Am Sleep If My Door Is Closed. In my distressed, confused, drugged, exhausted mind, the intrusions had upset me badly. To me, they said, You are not allowed to rest and to heal the way you need and want. They said to me, Despite your months of preparations for your surgery, you failed to prepare to manage Mom’s loneliness. They said, Your privacy will not be respected. My post-op mind has calmed. I can see how desperate Mom felt to appease her own loneliness and to connect with her suffering boy. I am better able to tolerate her visits, the timely ones anyway. And the sign on my bedroom door seems to have worked.

The Dementia Dossier: Post-op 2 (Report to the Choir)

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The family’s trained singer, Jeanette joined the church choir’s rehearsal on Sunday morning, held convenient at our house. Mom loves opening her home to the choir for weekly rehearsals. She gets to welcome all the singers (all neighbors), to chat them up, to receive their hugs and cries of “Lucille! It’s so good to see you. You are so cute!” She especially loves not having to go anywhere for rehearsal. Before surgery, I had written an email to my siblings and children summarizing the complex repairs involved. At rehearsal, Mom waved to the choir director: “I want you to read this email from my son to the choir.” The condition of Mom’s first-born, her baby, her injured boy, weighed heavily on Mom’s mind, and she wanted everyone to know what had happened to me. Jeanette gently intervened, suggesting that the email had been intended for family, not the general public. But she summarized the surgery to placate everyone’s sincere, curious interest. I appreciated Jeanette walking the fine line between politeness and privacy, satisfying all concerned: mother, son, and choir.

(Image by Khoa Lê from Pixabay)

The Dementia Dossier: Post-op 1 (Massage)

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It’s just genes, two different specialists explained. Genes that pulled at my heel and twisted my foot and flattened my arch over six decades. “Your calves are a beast,” the surgeon said, not referring to size or strength (sadly), but to pulling power. Fixing the foot, they promised, would allow me to walk and hike and travel for the rest of my life, whereas I had arrived at the point of no longer being able to walk for exercise. Sitting in the consult chair, I remembered Dad grimacing and clinging to his walker handles, sliding his deformed feet along, his ankle bones on the floor. “Let’s do it,” I said, and scheduled the surgery. Jeanette flew up for five days to take care of me, and, especially important, to take care of Mom. I would be either in my bed or in my office recliner, my foot above my heart, for a month, and no weight-bearing for two. “I want to see Roger,” clamored Mom the day I came home from the hospital. “I want to give him a massage.” Jeanette had gently suggested to Mom that “Roger will not want a massage.” A massage? Mom can still surprise me, apparently. Just where did the massage idea come from? And where did she imagine she would massage me? Not my sutured foot, certainly. My good foot? My bare knees? My bald head? The thought was too weird to study seriously. During her first short visit to my room, she stood over my feet with her fingers wiggling eagerly in the air, and I nearly screamed, “Don’t touch my foot!” She wasn’t going to massage me, of course, or even touch me. She was just sending me a little old-mother love through her wiggling fingertips.

The Dementia Dossier: I Can Take Care of Myself!

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I explained to Mom the pressure I live with every day of every week of the year of her wanting to go for a drive every day of every week of the year, and how tired I am of feeling that pressure. “Every time I leave the house, you look sad and disappointed,” I said. “And every time I don’t take you with me to run an errand, you look sad and disappointed. And you get upset with me every time you have a letter to mail and I don’t drive you right away to Help-U-Mail or the post office.” I explained how her 89-year-old friend LaWynn has someone come every day just to talk, or to play games, or to take her for a drive or to run an errand, or to make her lunch, or to change a lightbulb, or…. “I don’t need some stranger to come and play games with me,” she huffed. “I’m very happy with my blanket and my needlepoint and my word search puzzles—I don’t need someone to come and play games with me. I can take care of myself!” No. She can’t. Today I called five companion care companies to compare their abilities and rates. I have consulted my siblings and have their support. The reality is that within 30 seconds of meeting her care companion, Mom will adore her and anxiously await her next visit. She will love playing Rummikub and Boggle and Scrabble. She will love being driven around the neighborhoods. She will love her tuna sandwiches. She will love her letters being safely and immediately mailed. She will love not waiting a week or a month for a lightbulb to be changed. She will love love love telling a stranger all about growing up in rural Magna before it became an endless ocean of subdivisions and strip malls, and about her English and French and Swedish and Italian and Danish ancestors. She will love the hugs. We’re doing this.

(Image by Vilius Kukanauskas from Pixabay.)

The Dementia Dossier: Scoop with a Whoop

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No doubt you have heard of Elf on a Shelf, a modern holiday tradition where a toy Christmas elf is placed first on a shelf, then moved daily for family members to find. I have decided to add an elf cousin (very distant cousin) to the tradition, and am calling it Scoop with a Whoop. “It’s time for ice cream!” Mom whoops on an evening. “Enjoy your ice cream!” I call back across the room, wondering where I will find the ice cream scoop in the morning. Will it be in the utensil drawer? Not likely. Will it be in the freezer, on top of the ice cream container? Very likely. What about lying on the drying pad, partially rinsed? Possibly. Will it merely be in the sink, or on the counter? Other good possibilities. What about in the dishwasher? Not likely. Or, will I find it placed picturesquely on an oven mitt, stuck fast with dried ice cream? Yes: that’s where I found it most recently. I sent the mitt to the laundry and the scoop to the dishwasher. I think Scoop with a Whoop has real market potential. You won’t find the shelf-elf in the sink, in the dishwasher, in the freezer, or glued to a hot pad!

The Dementia Dossier: December Advent

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At the grocery store, I spied at the head of the checkout aisle a children’s chocolate advent calendar.  The price?  $2.59.  Each December day leading to Christmas, a child can open a perforated paper window to retrieve a small chocolate prize.  I thought Mom might enjoy the calendar, and the chocolate—she is more and more childlike, after all.  She was thrilled when I gave her the calendar and explain its purpose.  With both discipline and curious anticipation, she opened one window every day, delighted to see the sweet prize that lay inside.  Every day she shouted to me with glee, “Guess what I got today?!” from the advent calendar. One day it was a candle. Another day an angel, or a lamb, or a star.  This cheap little children’s advent calendar gave Mom more meaning and enjoyment in the celebration of Christ’s birth than any other single activity or decoration.  Who would have thought?  I will definitely be keeping this new holiday tradition in the years to come. Something so small was to Mom something so important.

The Dementia Dossier: Mentos Blue

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I finally said something.  We were watching on television a Christmas special from the Tabernacle Choir at Temple Square.  At high volume.  And still, above the orchestra brass and 360-voice choir, I could hear the smacking of Mom’s gum as she chewed and sucked on it with obvious enjoyment.  But I couldn’t stand the sounds any longer, wincing at every smack syncopating the music.  “Mom, I can hear your gum-smacking above the orchestra!”  She looked hurt.  “I don’t want to hurt your feeling, Mom,” which was true, “but it’s loud,” which was also true.  I quickly changed the subject, commenting on the expert singing of the soloist.  One convenient characteristic of Mom’s deepening dementia is that she quickly forgets her hurts and disappointments, returning to cheerfulness.  In fact, she quickly forgets most everything, except things like the names of the cemeteries where her grandparents and great-grandparents are buried, or the road names of the New Jersey town where we grew up, and from where Dad and Mom retired nearly 30 years ago, leaving forever for Utah.  Mom and I returned to our television show, and while she returned to her normal good cheer, I did notice that the gum smacking had diminished…for now.

The Dementia Dossier: Ice Cubes

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The water line to the refrigerator’s ice maker cracked years ago, ruined the kitchen’s oak-wood floor, and was permanently abandoned.  My daughter Laura has an amazing countertop ice-maker, producing pleasing, soft-crunchy cubes of pellet ice.  But Mom opted for a dozen of the old ice cube trays.  I confess to using my share of ice cubes for the day’s cold drinks, but it seems that every day I reach into the freezer only to find an empty ice bin.  Mom’s household routine used to include filling the empty trays at the kitchen sink and carrying them expertly to the freezer, without spilling: two stacks, six-high.  But with her walker a necessary tool of her daily perambulating, the chore has more often fallen to me.  With a busy schedule, running from one task and job and activity to another all the day long, the mental stoppage of finding the empty ice bin and needing to empty the ice cube trays into the bin and then to fill the trays with new water, has been a real irritant.  Mom uses by far more ice that I do, so I naturally expect her to fill the trays.  (Can I hear my readers offering sympathetic words of “Aw, you poor thing?”  I thank you.)  One reason the ice runs out so quickly is that Mom fills the trays only halfway, yielding half-cubes, naturally.  I, on the other hand, fill the trays completely, to yield large cubes lasting us twice as long.  Mom beat me to the job of filling the trays the other day: when, all twelve trays of cubes barely filled the bin.  “Mom,” I whined.  “Why do you fill the trays only half-full?”  Looking downcast, she explained, “I don’t like such big cubes.”  Besides her daytime use, her nighttime habit is to take a cup-full of cubes to her bedroom, to suck on them during her bedtime routine—and now I understand the desire for half-cubes.  The big cubes really are impossibly uncomfortably big and sharp to fit into one’s mouth and enjoy.  In fact, it might be similar to cramming a whole apple into one’s mouth instead of enjoying one reasonable bite at a time.  Half cubes it is, then.

The Dementia Dossier: Mobility

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Mobility, or the lack thereof, dramatically affects lifestyle. After lurching and stumbling for two years, my father’s universe shrank to his daytime recliner and his nighttime bed, with his only outings being to the bathroom.  Mom’s mobility has deteriorated as well.  The steroid and gel shots in her knees did not help with stability and pain.  A cane became necessary.  I suggested to Mom that a walker would make her life so much easier, and safer, and she finally agreed, rolling it around the house.  She even balances her breakfast dishes (including a tall glass of milk) on the walker seat, from the kitchen to her recliner.  (No spills yet.)  I finally convinced her to try the walker at church.  I explained, gently, that I could not go back to having someone hang on me and cling to my clothing as they lumbered painfully along.  I did it with Dad, for a long time, and would not (could not) do it again.  She gave in, and I folded the walker and stowed it in the back seat.  Trading out the cane for the walker allowed her to move more quickly and safely, and more independently: she didn’t need my elbow or the loose fabric of my suit sleeve.  Today I told Mom I needed to go grocery shopping—she was welcome to come, but I could not wait for her to follow me through the aisles in the store.  To my surprise, she offered what I have suggested and she has rejected several times: using an electric shopping cart.  “I think that would be easier and better!”  So do I, I sighed in silent relief, surprised at her new willingness.  She got the hand of the throttle and steering, and set off happily through the store.  I even found myself following her once or twice.  Now that’s a change.

The Dementia Dossier: The End of the World

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Mom’s computer printouts have been coming out more and more purplish-red as the black ink ran out and the color cartridge eked out its last.  “Looks like you’ll need new ink very soon,” I observed.  This morning, she rolled herself and her walker into the kitchen and gave me a look of panic and consternation.  “You’re giving me a look that says the world is ending,” I observed.  It was…for her.  I had noticed earlier on her desk a page printed red on the top half of the page only, and faded into nothing for the bottom half.  “My printer won’t work!” she shouted, more in anxiety than anger.  I reminded her she was running out of ink.  “I know…I tried to put the new cartridge in…but I couldn’t do it.”  Indeed, she had inserted the new cartridge, but incorrectly, and it was stuck fast in its slot.  HP had designed its cartridge bays so that when an 86-year-old tries to install her own cartridge, she will do it wrong and not be able to remove it and will panic and give up and will need a new printer.  I worked and worked to remove that cartridge, but it had clicked in incorrectly and was locked in.  I looked like a quack surgeon, with my headlamp and instruments operating on the printer’s innards.  With no little force and a great deal of twisting and prying, the cartridge finally released.  But not before staining my thumbs.  Baby wipes wouldn’t clean them.  An alcohol-soaked cotton ball wouldn’t clean them.  Soap and water?  Nope.  I’ll try mineral spirits next, I guess.  I have to give Mom credit, though, for trying to solve her own problem before coming to me.

The Dementia Dossier: Free Shots!

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After taking Mom for her third of three rounds of knee injections, we drove to Walgreen’s for a prescription. A sandwich-board A-frame sign greeted us as we pulled into the handicapped parking stall.  Mom read the sign out loud: “Free Flu Shots.”  Then she exclaimed, “Free Flu Shots!  Have you ever heard of such a thing?”  Indeed, I had.  “Mom, you got your flu shot here, for free, just a month ago.  And you got your Covid-19 shot here also, for free, two weeks later.”  They were free to her, anyway, her health insurance having paid any cost.  “I did?  They were free?” she exclaimed again, then mumbled, “I don’t remember that.”  I didn’t want to make her feel bad, and asked only if she recalled how nice the pharmacist was, the one with the curly hair.  “Oh yes, she was wonderful.  She lives nearby in Draper and has two children and went to high school in South Jordan.  What a lovely woman.”

(Photo from Walgreens.com, used under the Fair Use Doctrine.)

The Dementia Dossier: Long-Distance Call

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On a scenic afternoon drive, I told my mother I had spoken with my girlfriend as she was visiting family on the American west coast.  “How did you do that?” she asked is some amazement.  Not trying to be a smart ass, but also not comprehending her question, I responded simply, “Uh…telephone?”  She nearly began to cry as she exclaimed, “I’m so stupid!”  I tried to reassure her she was not stupid, and told her my own story of holding my phone to my ear talking to Caleb as I sat at a red light, then panicking at not seeing my phone on the console, and demanding of my girlfriend and her girlfriend, “Where’s my phone?  Where’s my phone!”  They looked at me strangely, then began to laugh, and I realized the phone I was desperate to find was in my hand and pressed to my ear, with my son on the other end of the call.  I was tempted to feel stupid, too, but chuckled shame away and laughed it off as one of the funny tricks our minds sometimes play on us.  Still, I wondered at Mom’s momentary bewilderment at how I was able to speak with my long-distance sweetheart.

 

Image by Heiko from Pixabay

 

The Dementia Dossier: Shots 2

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(Mom to doctor, as the syringe enters the void of her knee joint): “How’s your family?”  (Doctor looks up and around, momentarily confused): “Who, me?”  (Nurse, who had mouthed Who, me? looks relieved.)  (Doctor to Mom): “Fine…How’s yours?”  (Mom to me): “How are we?”  (I do not answer the question.)  (Mom to nurse): “Do you have kids?”  (Conversation ensues about nurse’s kids.)  (Mom to everyone): “My birthday’s this week.”  (Hearty congratulations from doctor, approaching with second syringe, and nurse.)  (Mom to everyone): “It’s on Thursday.”  (Friday, actually.)  (Mom to everyone): “I’ll be 87!”  (86, actually.)  (Hearty congratulations and light laughter.)  (I roll Mom’s wheel chair out of the room.  The doctor smiles at me, whether in amusement or sympathy I cannot tell, but not likely in general good humor.)  (Mom to doctor as she rolls by): “My knees feel all full and squishy, and they sting a little.”  (Doctor to Mom): “That sounds about right.  See you next week for round 3!”

The Dementia Dossier: Poor Bank

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Returning from an errand to the post office, I was explaining to my mother some aspects of my new work as an immigration attorney.  After leaving a 32-year career as a municipal government attorney, the director of the non-profit No More A Stranger Foundation (NOMAS) asked if I would consider starting a new career and working for her as an immigration attorney.  (I had volunteered there for a couple of years.)  NOMAS helps people with their immigration applications to legalize their status, at no charge to the clients.  The work would be part-time and paid “low-bono” (not quite pro-bono, but nearly).  I help prepare applications for naturalization, green cards, work permits, asylum, human trafficking visas, crime victim visas, student visas, and many others.  I am having to learn immigration law from scratch, and the Administration’s frequent policy changes aren’t making the learning easy.  Immigrants, whether in the U.S. lawfully or not, face real financial and social hardships.  They contribute to the economy and community, but often have the lowest-paying jobs and suffer discrimination, bigotry, and isolation.  NOMAS attorneys (a few) and volunteers (many) do what we can to legalize the status of immigrants so they can have improved quality of life.  As a sidebar story, our local Wells Fargo branch closed.  Mom and I knew the manager, bankers, and tellers, and were sad to see them leave, and sad to see our convenient banking location shuttered.  Coming home from the post office, we sat in our car at a red light as I explained immigrant hardships.  Mom did not respond or react at all to my narrative.  But upon seeing the closed bank building, she sighed, “Poor bank.”  I thought Wells Fargo was anything but poor.  And I thought my immigrants were much more deserving of her sympathy.  But Mom felt what she felt, and understandably related more with and sympathized more with what she knew than with what she did not.  And the universe of what she knows is shrinking.  (If anyone would like to support the work of the No More A Stranger Foundation, or are looking for a worthy Giving Tuesday or year-end charity, you may make a donation at the NOMAS website.)

The Dementia Dossier: Dinner in a Drawer

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Dinner consisted of meat paddies (ground beef and pork), cheese tortellini, steamed asparagus, and sauteed sweet onions and mushrooms.  Mom hooted over the sauté: “Woo-hoo! I just love onions and mushrooms!”  Part way through our dinner television program, I noticed, in my peripheral vision, Mom open her middle end-table drawer and insert her dinner plate.  Gathering the dishes later, I asked her, “Do you want me to get your dinner plate from the drawer?”  Flustered, she reached for the bottom drawer.  “It’s in the middle drawer,” I observed.  She opened the middle drawer and retrieved her plate, empty of onions and mushrooms and asparagus tips, but all the meat remaining.  “I didn’t want you to be disappointed in me,” she said.  “I just couldn’t eat the meat.”  Not to worry, I reassured her—she could eat or not eat what she wanted.

 

Image by Guilherme Teixeira Guilhermim from Pixabay

The Dementia Dossier: The Victim

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“You see yourself as a victim,” she said, “and as long as you see yourself as a victim, you’ll be trapped in anger and resentment.”  Exactly where I have been.  The suggestion stung.  I did not want to hear it.  But I heard it.  And I studied it, and turned it over, looking at all sides, and I asked myself, Is that what I do?  A victim of my mother’s dementia.  A victim of my father’s dementia and diabetic paralysis.  A victim of a spiteful boss.  A victim of frequent illness.  A victim of an unhappy marriage.  A victim of an unhappy divorce.  A victim of loneliness and isolation.  I have been wanting to find a way through, if not a way out, of my challenges.  I have even been willing to see life differently, to acquire another perspective, and to pay the price for that wisdom—but I could not see how to get there.  My sister Jeanette showed me how.  Stop suffering under the weight of your victimhood.  Choose where you have choice.  Submit where you do not.  Laugh.

 

(Pictured above: my backyard view of fall.  Sandy, Utah.)

The Dementia Dossier: Boggle

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Somehow, the game Boggle has become a three-generational Baker family favorite (the fourth generation is still too young).  Put away your Monopoly and your Risk and the crazy card games.  Boggle rules.  My children even ask for Boggle when they come to visit, despite my branching out into Uno and Golf (they also love Monopoly, Risk, Cover Your Assets, and the crazy card games).  Mom used to kill it at Boggle.  An educated, well-read woman, she wrote long lists and racked up the points.  My sister Jeanette is also a pro.  My son Caleb recently challenged Mom and me to a few rounds of Boggle.  I topped 27 points in the first round, with 47 total for three.  Caleb did well, coming in second not far behind me.  Mom got 2 points each round.  She still finds lots of three-letter words, but her lists are growing shorter.

The Dementia Dossier: I’m Too Full

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Dinner would be ready at 6:30, I told Mom.  Pork chops.  Mashed potatoes.  Yellow squash.  Yum.  She gave a noncommittal nod, watching the news.  As I turned away toward the kitchen, she pulled a banana Creamy out from under the dish towel on her lap.  Whatever, I thought.  Creamies are her new staple, her comfort food, coming in orange, banana, chocolate, and cherry flavors.  Creamies rank high on the weekly grocery list, along with gallon buckets of Farr burnt almond fudge ice cream.  We come home with two boxes of twenty Creamies, and two gallons of Farr’s, every two weeks.  One week, the only items on the grocery list were Creamies and Farr’s!  I really enjoyed the pork chop dinner, but Mom not so much.  She ate a little squash and a bite of chop.  “What’s wrong Mom?” I asked.   “Does everything taste all right?”  “I’m just not that hungry,” she said meekly.  Dinner was over by 7:00.  Mom wheeled her walker into the kitchen as I finished up the dishes, and a minute later wheeled back to her recliner with a large bowl of burn almond fudge on the walker seat.

The Dementia Dossier: Recycling Excess

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I dropped the empty peanut butter jar into the trash can, and covered it carefully with banana peels and used paper towels.  I had decided the natural resources required to clean the plastic jar sufficiently to be recyclable (e.g., a gallon of hot, soapy water) were worth much more than the plastic’s value.  Besides, I didn’t want to wipe the peanut butter remnants from the jar.  But for my hiding the jar, she would have pulled it from the garbage and cleaned it for recycling.  After I tossed in the trash a sandwich baggie containing bits of salmon, mostly scaly skin, I found the bag wet and smelly drying next to the clean dishes.  “Mom,” I called across the room, “nobody wants to recycle this fishy sandwich bag.  They don’t want it.”  She huffed as I tossed the bag again into the garbage can.  One evening we returned from a church chili social.  My son, Brian, pushed her wheelchair from the church building next door.  Back at home, I found on her desk her plastic chili dish, her plastic cider cup, and her plastic fork and spoon.  “Mom, why are your dirty chili dishes here at home,” I called across the room.  She huffed and told me she wanted to recycle them.  I knew none of the items were acceptable for recycling, and used her trick in reverse by later pulling the items from the recycling bag and hiding them amongst the trash.

The Dementia Dossier: The Power of the Print

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I frequently hear Mom’s inkjet printer whirring as she prints the day’s emails.  She prints the church program and church notices.  She prints her hair cutting appointment, and then the receipt.  She prints letters from her missionary grandchildren.  She prints funeral notices and obituaries.  She prints pictures of grandchildren’s lizards and hikes and birthdays.  She holds the printouts up to me and asks, “Do you want to read this letter from _____?”  I already read it, Mom.  I got it, too.  Mom seems to find enormous pleasure at having the power to transport her electronic correspondence from the computer screen to a tangible stack of stapled pages.  “I need you to order me some new ink for my printer,” she informs me.

 

(Image by OpenClipart-Vectors from Pixabay)

The Dementia Dossier: Arthritis In My Knees

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Mom’s knees pain her and are weak and wobbly with arthritis. “I feel like I might fall,” she often says.  You can’t fall, I want to say.  If you fall, your life in this house will be over.  At the nearby hospital, the orthopedic doctor prepared to inject cortisone into her knees.  I asked him questions about injection dosage and frequency, and he answered that the dosage was fixed, standard, and the injections could be administered only every three months.  I thanked him for the information.  The doctor asked Mom if she had any questions.  “Do you want me to pull my pants down now?” was her answer.  I felt a bit embarrassed as the doctor shifted on his feet and stammered a suggestion that maybe she could lift her pant legs.  She could not.  Down came her pants.  In went the needles.  “I hope the shots help, Mom,” I managed as I wheeled her out to the car.  They did not.

 

(Image by Ewa Urban from Pixabay)

The Dementia Dossier: I’ll Miss You

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“See you in a bit, Mom,” I waved as I walked toward the front door on my way to run an errand.  “Okay.  I’ll miss you.  I’ll be lonely.”  I ground my teeth and glowered.  The more I pull away, the more attached she wants to be, and in turn the greater my desire to turn away, and the greater her loneliness.  I’m not here to hold your hand and keep you company all day. I wanted to tell her.  I’m here to call 9-1-1 when you fall.  I’m here to feed you one good meal a day.  I’m here to keep you safe in your home until you die.  I never say any of these things, of course.  I’m too afraid to hurt her feelings, feelings which she cannot control or even be aware of in her dementia.

The Dementia Dossier: Nothing’s On

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As I cleaned up the kitchen after dinner, Mom surfed the cable channels (access to 100+).  She pressed the “channel up” button one at a time, roaming slowly through each of the channels.  The process seemed to take forever.  After surfing past baseball games, basketball games, news programs, a dozen movies, a tennis match, nature and history documentaries, and even her beloved crime show reruns, she turned the television off and pronounced with some disgust, “There’s nothing on.”

The Dementia Dossier: Getting Cash

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Mom told me she needed me to take her to the bank so she could get cash.  She was carrying her checkbook, and had written a check out to “cash.”  I figured the outing was less about the cash than the outing itself.  But I couldn’t resist asking, Why are we doing it this way?  I can just drive by the ATM the next time I’m out.  “Because that’s what I want to do!” she answered, flustered and almost in tears.  So, I took her to the bank.  She staggered to the car in the garage, staggered from the car to the bank building and down the long corridor to the teller.  She presented her check and got her cash, and staggered home in reverse order.  The next time we ran an errand together, I drove by the ATM machine, tapped my card, and took my cash.  “I’m absolutely amazed you know how to do that!” she exclaimed.  I wanted to smile, but couldn’t.  In her dementia, the ATM was some mysterious miraculous machine never before presented to her consciousness.

(Image by Gerd Altmann from Pixabay)

The Dementia Dossier: The Old Wallet

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For decades I had admired Dad’s black leather wallet: not a bi-fold or tri-fold, but a full-length wallet holding his ID cards and credit cards and unfolded cash.  A real man’s professional wallet, I fancied as his worshipper and shadow follower for years.  A sophisticated man’s wallet.  The wallet of an intellectual.  When Dad died, I secreted the wallet, with his cards and cash, in my bedroom, knowing where it was if it were needed.  Out of loyalty and transparency with Mom (and the estate), I told her that I had the wallet, what was in the wallet, and where I had hidden the wallet in my bedroom.  Dad had another wallet, at least one that had been given to him, but never used: a nylon and Velcro camouflage tri-fold.  Mom asked every member of the family who came into her orbit if they wanted Dad’s camo wallet.  The stiff, green, empty thing had no meaning to anyone, and no one wanted it.  But Mom really wanted someone to have “Dad’s wallet.”  My lovely sister, Jeanette, also did not connect with the camo, but mentioned offhandedly to Mom how she much had admired Dad’s black leather wallet.  Sometime later—how long I don’t know—I went to the hiding place to retrieve Dad’s wallet, for his social security card.  Instead of the black leather wallet, I found the plastic camo wallet, complete with all Dad’s cards and cash neatly cached.  The implications of what had occurred crashed in around me: Mom had snuck into my room, had opened my drawers, had rummaged through my things, and had snuck the old wallet out, replacing it with the cheap camo, and transferring all the contents.  I could almost hear her thinking, I’ll move everything into the plastic wallet, so it’s okay.  I approached Mom with the camo wallet raised, and said to her evenly, “Mom, I’m going to try very hard to be calm as I talk to you,” and then proceeded very uncalmly to ask her, “What is this!”  She seemed befuddled, and offered that she could ask Jeanette to return the leather wallet.  “It’s not about the wallet,” I responded.  “It’s about you sneaking into my room and getting into my stuff.  Stop sneaking around!”  I left her in tears as I stormed from the room.  Oy vey.  Jeanette felt terrible when I told her the story, and offered to return the wallet.  Among other things, I told her I was very happy for her to have Dad’s wallet as a family keepsake—and I meant it.  My feelings weren’t about the wallet.

The Dementia Dossier: Lights Blazing 2

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The chandelier was on again, all 16 incandescent bulbs, for the third time that day. I had turned it off twice already.  And now it was blazing again.  “Alright Mom.  I give up.  I have turned the chandelier off twice today, and it’s on again.  You win.”  She looked crushed.  “I went to sit on the front porch.  I forgot to turn it off when I came back in.”  Exactly! I wanted to say.  Mom is incapable of passing a light switch without flipping it up and turning on some light or other.  Her morning pathway includes the 16-bulb chandelier, two hall ceiling lights, five table lamps, and 25 recessed bulbs.  Conversely, she seems incapable of flipping a light switch off on her return trip.  Having not said “Exactly!” but having said “You win,” I left the lights on all day, despite my acute and painful awareness of my expanding carbon footprint, which I imagined to be the size of the Great Salt Lake.  The next morning, in advance of her descending the stairs via the chair lift, I turned on the chandelier, the hall lights, the lamps, and the recessed lights.  I decided to preempt (but not disrupt) her blazing lights routine, adopting it as my own (for today, anyway), refusing to engage in a petty power struggle (for which I am partly responsible, especially the petty part).  I know I won’t be able to hold out, perhaps not even for a day, and will surreptitiously here and there follow after her, turning lights off.

The Dementia Dossier: Rigid Dementia Routines

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A month after my involuntary retirement, and the illness that followed, I finally found the mental energy to map out a new routine for my daily life. My routine involved time for reading scripture, exercising, new writing projects, painting lessons, low-bono work with an immigration non-profit, and yard and house projects.  I also built in time to take Mom for her necessary errands, like the post office or the pharmacy.  Since Mom is so routine-bound in her dementia, Jeanette suggested Mom would benefit greatly from seeing my schedule, knowing my routine, and knowing that she was a part of it.  I printed the schedule, and Mom taped it to the lamp next to her recliner, where she could always see it.  I knew a routine would need to be flexible.  Without flexibility, the routine would cease to be the servant and become the master.  Instead of the routine serving my purpose, I could become a slave to the routine.  That flexibility proved necessary as I succumbed to sinus and bronchial infections that laid me flat for much of eight weeks and dragged me through two ten-day microbiome-depleting rounds of antibiotics.  The illness destroyed my routine.  But every day near 2:00 p.m., Mom asked—according to my routine—to be taken to Help U Mail or Walgreen’s or out for a drive: Ahhh! Just look at the beautiful blue sky!  I began to roil with increasing resentment, and biting my tongue and clenching my teeth, I evenly uttered, “Mom, I don’t think you have a sense of reality right now about what I can do.  I had just enough strength to watch Jeopardy with you for half-an-hour.  I’m not up to an outing.”  After more than two months, I am nearly recovered, but my routine remains in a shambles.  Returning from an appointment at 4:00 p.m., I asked Mom how her afternoon had gone.  “Quiet,” she answered, and continued under her breath: “I guess I’m stuck in the house today.”  “Stuck?” I answered.  She thinks she’s stuck in her recliner, I thought.  She thinks I’m responsible for her getting unstuck.  “You’re not stuck,” I challenged.  “You can get up from your recliner and sit in a chair on the front porch and look at the blue sky, the clouds, the endless airplanes, the cars driving by.  You can sit on the back porch and look the mountains with their maples turning red and the dustings of snow on the peaks.  You can use your walker on the sidewalk for a quick walk.”  And then I saw it.  When I began my new retirement routine, I had made time for her in my daily schedule.  My  My schedule.  She had taped my schedule to her lamp.  And with that bit of adhesive tape, I became part of her routine and her schedule.  I had been sucked in even further by her consuming dementia.  I was now another symptom of her slavery to dementia routines.  The next morning, I pulled the paper from her lamp and crumpled it into the trash.

The Dementia Dossier: Getting My Email Up

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Mom checks her email first thing, last thing, and several times throughout the day. Several years ago, I placed a short-cut icon in her task bar, and explained, All you have to do, Mom, is click this one button—nothing else, and your email will come up.  She recently called to me from her office for help with her computer.  “I can’t get my email up!” she exclaimed in exasperation, staring helplessly at the computer home screen.  I looked at her screen, saw that no apps were open, and asked her if she had clicked the email icon I had made for her.  “I don’t remember how to do it,” she whispered in dismay, sensing that she ought to remember, but couldn’t.  I reminded her about the email icon.  She clicked it once, and up popped her email.  “I just couldn’t remember how to do it!” she cried with relief.  Gladly, she hasn’t had any trouble since.

(Image by Raphael Silva from Pixabay)

The Dementia Dossier: Paying the Bills

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On the first day of every month, Mom’s scheduled task is to “make out the bills,” which means writing a check for each utility, communications, insurance, medical, and tax bill, etc.  By the end of the day, a tall stack of envelopes is addressed and stamped and feeding her anxiety for immediate posting, which means I am to take her—now—to the post office or the copy & mail store.  She doesn’t trust placing outgoing mail in the mailbox, not that she should.  Last month, the County Treasurer sent Mom a check refunding a tax payment because she had paid it twice.  Another refund check came from her doctor, whom Mom had paid twice for the same visit.  On the doctor bill, I give her the benefit of the doubt, because invoices and payments can cross in the mail.  The tax bill she simply somehow paid twice.  I am monitoring the frequency of refund checks before deciding whether I need to start helping her make out the bills.

The Dementia Dossier: Lock Box

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I had calmed myself enough to want to join Mom in our camp chairs in the driveway watching the sky at dusk.  I sat and breathed and relaxed.  And Mom’s opening comment was, “I want you to do something for me.”  Yes, I literally stiffened as I said What.  “I want you to take that black box lock thing off the front door.  Everyone is asking me if I am moving.”  My immediate response, intelligent and nonjudgmental, was They’re all idiots!  That lock box has been on the front door handle for four years—four years without worrying what the neighbors might think about us moving.  Sarah bought and hung the box because if Dad was home alone (i.e., when I took Mom grocery shopping), and he couldn’t get to the door (he couldn’t get to any door), people could call me for the combination and could open the box for the house key.  It proved useful for nurses and family members.  But one of Mom’s friends saw the lock box this week and asked her if she were moving, and Mom suffered immediate terror at the thought of leaving her home of 27 years, of her rutted routines disrupted, of the end of life as she knows it.  She was correct that we don’t need the lock box anymore because Dad passed away six months ago, and Mom can get to the door…so very slowly.

The Dementia Dossier: An Outing

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Would you like to take a drive to La Pequeñita today, Mom?  “I would LOVE it!”  And off we drove to the Latin food import store on State Street in Salt Lake City.  On the freeway, her head turned this way and that from side to side, marveling at the seemingly new sights of the city she has lived in for all but 4 of her 86 years.  “Would you look at that!” she remarked about a semi loaded with used cars.  “Look at all those cars!  I’ve never seen anything like that!”  Surely you’ve seen a car carrier before, Mom.   “But not with THAT many cars on it.”  After purchasing our Brazilian bom-bom candies and our Antártica guaraná soda and our manioc puffs (she also threw in a bag of dried white lima beans), we shuffled to our car.  “Where do you suppose that little road in back of the store goes?”  Well, I guess we had better find out.  I drove into the dingy alley, which very quickly emptied onto a sub-collector.  “Well, what do you know?  Amazing!”

(Photo from Yelp used under the Fair Use Doctrine.)

The Dementia Dossier: Ice Cream Scoop

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Twice I had searched the kitchen for my favorite ice cream scoop: aluminum, with a cutting blade and anti-freeze in the handle, and had given up, selecting instead an inferior model, which would still work, but not as well. Upon opening the freezer, I found the favorite scoop sitting on the gallon tub of Farr’s burnt almond fudge ice cream, Mom’s favorite.  The second time I found the scoop there, I asked her, “So, Mom, is this where we’re keeping the ice cream scoop now?”  She grinned in embarrassment and confessed to being “too lazy” to wash it and put it back in its drawer.  There is a certain efficiency, I suppose, in keeping the scoop in the freezer with the ice cream.  Perhaps we should stash the carrot peeler in the refrigerator vegetable drawer, and the potato peeler in the pantry, and the measuring spoons in the spice cupboard.  But I vote for consolidation in a common centralized location: the utensil drawer, which is where Mom has put the scoop since.

The Dementia Dossier: Operation Mouse

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“I need your help with the computer,” Mom announced, not an unusual daily routine.  But this time she seemed unusually distressed.  Peeking into the study, I found the relic desktop tipped onto its face, and mouse innards splayed across the old oak desk.  What happened here? I asked.  “The mouse stopped working, so I tried to fix it, but I couldn’t, so I turned the computer off and unplugged the mouse chord.”  Unsure of the relevance or wisdom of each of these procedures, I examined the mouse parts and sighed.  Mom never tries to fix anything, especially not computers—I’m her repairman—so what had compelled her to attempt this repair job escaped me.  But I had no patience that day for attempting to piece back together something I had not taken apart.  The mouse was thoroughly disemboweled, and I could not immediately see how the pieces fit together.  Maybe I just wasn’t in a fix-it mood.  The easier route, for me, on that day, was a quick drive to the DI thrift store to purchase a new old mouse for $3.00.  At home, I sanitized it with 99% germ-kill wipes, plugged the chord into the USB port, and righted and turned on the computer.  The disassembled mouse parts went into the trash with the ragged teddy bears.  “You’re in business,” I declared, to her relieved sighs.

The Dementia Dossier: A Lecture

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On my filing cabinet sit two framed copper sheets into which a Greenwich Village street artist pressed my parents’ portraits in 1963. They capture my father and my mother at the apex of their young lives: newly arrived in New York City from their rural Utah roots, a graduate student and his pretty young wife, no children, no debt, the future at their fingertips.  I love the pressings and am so pleased my parents gifted them to me years ago.  This morning, though, they were gone.  On opening the top filing cabinet drawer in search of a file, I found the frames hidden in the drawer.  I marched to my mother and asked angrily if she knew anything about the portraits being moved to the drawer.  “They are ugly,” she announced.  “I was sitting in your chair waiting for the laundry and just couldn’t stand to look at them anymore.”  Well, I spat, these portraits are mine, and I love them, and I love them where they are.  And that is my chair and my private space you have been sitting in and messing with.  And you are not allowed to sit in my space and touch my things and move my things around, whether you like them or not.  If you see something of mine you don’t like, you are allowed to talk to me about it or to leave my room and sit somewhere else while you wait for your laundry.  But you are not allowed to be in my private space or to touch and move my special things.  Of course, she cried.  But I was too piously put out to care.  I felt justified in drawing an immediate and clear boundary, one she should have already been fully aware of without my emotional explanation.  And of course, it was stupid and mean of me to do anything other than kindly and patiently explain appropriate boundaries to my old mother who has lost her husband of 62 years and who can’t stand to see herself and her handsome young husband in the beautiful prime of long-lost youth.

The Dementia Dossier: Stuffed Animals

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A pile of stuffed animals at the front door greeted me as I came downstairs for breakfast.  I have seen one of these rotating stuffed animals on Mom’s bed pillows for years.  “I want you to throw them away,” she instructed.  Okay, Mom, but what’s this all about?  “I’m just tired of them,” she kind of explained.  Apparently, but what happened to make you suddenly want them in the trash?  They’re just old, she reasoned, and she was tired of them and didn’t want them anymore.  She thought they were too dirty to donate to the Deseret Industries (DI) thrift store.  I checked with my sister to see if the stuffed animals had any historical or sentimental value.  Indeed not: Mom had herself purchased them at DI years ago for maybe a dollar each.  Waste Management will pick them up on its Monday morning run.

The Dementia Dossier: Dinnertime Movies

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NCIS: The Crime Show that Has Something to Say about Racism ...

Mom and I enjoy watching television during dinner, her from her recliner, with her plate of food balanced on her belly, and me sitting at my TV tray.  But finding a program we both like can be a challenge.  I can’t stand murder mystery/crime shows (read NCIS), and she is done with Star Trek.  I have tried funny, touching, and exciting movies, all to mixed reviews.  One thing I know, though, is that movies are simply too long for her.  After about 45 minutes, she begins tapping her fingers, glancing repeatedly at the clock, and sighing.  That’s when I know it’s time to take a break.  “We’ll pick it back up tomorrow,” I suggest.  And I clean the kitchen, and she channel surfs, inevitably landing on murder.

(Photo used under the Fair Use Doctrine.)

The Dementia Dossier: Tissues

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With her decreasing mobility, Mom’s world has slowly shrunk to her recliner and its reachable environs: her needlepoint basket, and her end table drawers with books and jelly beans and O’Henry bits and the telephone directory and TV remotes, and tweezers and nail clippers…and tissues. She does venture out on the occasional trans-oceanic voyage to the upstairs laundry room, or trans-continental trek to the mailbox.  Even the main level bathroom, however, is a journey.  Her recliner has become the center of her universe, with a constellation of personal items close by.  She seems to prefer Little Caesar’s Pizza napkins for tissues, though I find them rough for tissues and useless for napkins.  I hear a drawer opening, a nose blowing, a tissue rustling, then shake my head as the used tissue goes back into the drawer for multiple later usages as the weeks drip by.  Instead of just shaking my head this time, I found a solution and brought her a small garbage can and a box of clean tissues.  Do you have a garbage can, Mom?  No?  I see that you don’t have a garbage can.  Here is a small garbage can.  And here is a box of new clean tissues.  No more recycling used tissues, okay?  And I left her to grasp the implications of what I had said: throw away your used tissues into the garbage can.  I looked over at her at the next nose-blowing sound, and saw with satisfaction a new white tissue, and clenched with chagrin and futility as the used white tissue dropped into her top drawer for later reuse.

(Image by Anna from Pixabay)

The Dementia Dossier: Basement

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My new sweetheart joined in Father’s Day celebrations, conversing easily with my sons and daughters in law, munching on bacon burgers with all the fixings, tossing corn hole bean bags, and tickling my grandchildren.  Mom had insisted on my darling sitting on her lap for hugs and kisses and conversation, and my dear one cheerfully submitted.  (Mom asks the same of me, and I persistently refuse.)  Needing a few minutes of privacy to discuss some sensitive couples questions, I took my new love’s hand and led her down the stairs into the cool basement great room.  In a few minutes came a knock on the wall, from Hannah, looking for me, and chuckling with a blush that “Grandma” had suggested she knock in case my pretty one and I were “making out.”  She laughed and my sweetheart laughed and ogled and I did not laugh or ogle but shook my head for the severalth time that day.

(Image by Rudy and Peter Skitterians from Pixabay)

The Dementia Dossier: Silk Pie

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French silk chocolate Nutella cream pie in a toasted graham cracker crust.  Ahhhh.  “This is very possibly the most amazingly delicious thing I have ever tasted,” praised my son Brian at my birthday celebration.  Not wanting to ask anyone to bake or buy a birthday cake for me, I had made my own, this luscious French silk chocolate Nutella cream pie in a toasted graham cracker crust.  Everyone loved it.  I could eat only a small taste because of how the sweet aggravated my searing sore throat.  After the party, a plate with half the pie went into the fridge for Mom and me to enjoy later.  I’ll have a slice for my lunch tomorrow, Mom said.  I invited her to help herself to as much as she liked, only save me one piece, because I had labored two hours to make the pie and wanted to enjoy just one more slice when my throat felt better, despite dieting to reduce my sugars.  And later in the week I was ready, my throat feeling great, my sugar intake dramatically decreased, ready for my last piece of silky smooth sweet.  On opening the fridge, I found the plate gone.  Mom, where is my pie?  I told you to enjoy as much as you wanted but to save me just one piece.  Do you remember I told you that?  Just one piece?  Confusion clouded her face as she mumbled, I guess I forgot.  I’m sorry.

The Dementia Dossier: Resting

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She’s up at 8. Like clockwork.  Up at 8 and in the shower and down the stairs by 9 for her crunchy dry Cheerios and glass of milk on the side and a glass of hot tea in the incessantly beeping microwave begging for someone to come attend.  And Monday is laundry day.  And laundry comes after breakfast, beginning at 10 or so.  I texted my mother about my illness and miserable night, about my aches and chills and inability to sleep, and about needing to rest, and she responded Me Too.  But the water started flowing and squirting, and the washing mashing swooshing and spinning, with my head resting on its pillow and the pipes and drains and machine six inches away through the wall.  Rest now futile, I stood in my bathrobe fuming and wondering and watching my mother jam the dowel into the soaked whites.  You saw my text that I was sick and needed to rest, right?  You know that my bed is just on the other side of the pipes and I can hear everything, like my head is inside the washer, right?  Well, I waited for a while…but I was out of clean underwear.  I’m just trying to understand what you were thinking.  Because you could have done the laundry later, like at 1, or at 2, right, so I could rest?  Well, I don’t know, I was out of clean underwear.  This conversation came slowly, in snippets, as I gauged her capacity to absorb feedback without hurting her feelings, and like most such conversation with her, she had no capacity and did have hurt feelings, so I had failed again at discerning how to communicate through dementia.  She seemed confused at the notion of delay and incapable of weighing priorities and convinced that her need for tomorrow’s clean underwear was paramount today, and she must do the laundry, now now now, before it was too late and the day had turned into late Monday or, forbit it, tomorrow.

(Image by moerschy from Pixabay)

The Dementia Dossier: Nude.

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I had escaped the west-facing heat of my bedroom to the constant cool of the basement to find sleep.  When I climbed the stairs and passed Mom’s bedroom at 8 a.m. the next morning, a Sunday, she was trudging across her room, in the nude.  Seeing me suddenly, she started and tensed up and covered, but had nowhere to hide, and I walked past, pretended I hadn’t seen her.  Several minutes later, all dressed for church, I attempted to bring up the subject, hopefully without embarrassing her further.  “So, you were walking around your room naked this morning….”  She reddened a bit, and answered that she had been walking from the shower to her dresser for clean undergarments.  I wondered aloud if she might take her undergarments to the bathroom on her way to the shower (which is what she has always done, so far as I know), instead of on the way back.  “I guess I could do that,” she conceded, the idea a revelation.  “I didn’t think of that.”

 

(Image by Moondance from Pixabay)

The Dementia Dossier: Watching

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Do you know the feeling of being watched, but when you turn around, no one is there? As it turns out, in my case, someone is there, though often out of sight.  Mom watches me.  Her eyes follow me around the kitchen as I cook or bake or clean up.  She watches me from the kitchen window, or from my bedroom window, or from her recliner-side window, as I do the yardwork: “I saw you pulling so many weeds!”  Serving dinner to her in her tv-watching, needlepoint stitching, word puzzle circling recliner takes several trips—first the mango juice in a glass with ice, then the salad or fruit or toast, then the main dish—and her eyes seek to fix upon mine with each approach, as if begging me to beam back the affirmation and connection she craves in her new loneliness.  And I just cannot do it.  Like staring into a bright light, I turn my discomfited gaze away and perfunctorily do the duty of delivery.  I have told her, gently, that I cannot be the antidote to her loneliness.  Jeanette, Carolyn, Megan, Barbara, Deanna, and others do their best to fill that function.  I serve her meals, make home repairs, answer correspondence, keep the yards beautiful, shampoo the carpets, resolve her computer and internet difficulties, manage the finances, fill the pantry and fridge, and generally problem-solve.  But I am here.  And I am doing my best.  And we do talk some.  And we watch tv together.

(Image by Michaela 💗 from Pixabay)

The Dementia Dossier: Jobs

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“You three boys empty the dishwasher for me, will you?” called Mom, from her recliner, to my brother and his son, who were beginning a week-long visit, and to me.  “You bet, Mom!  Come on, son!” my brother answered with his usual enthusiasm.  I, however, grumbled, and a bit too loudly.  “But Mom, emptying the dishwasher is, like, your only job!”  I confess to the sin of annoyance at being instructed to do a job she is perfectly able to do, and does regularly, quickly and efficiently, all by herself.  Steven did a quick and cheerful pivot: “Come on, Mom, we’ll help you!”  And Mom and her son and grandson emptied the dishwasher together, with Mom, of course, instructing her visitors on the correct location of each item.  I did not help them, not out of stubbornness or principle or pride, but rather from practicality: four adult bodies huddled around and reaching into the Bosch and adjacent cabinets clearly would be too many.

(Image by Natasha G from Pixabay)

The Dementia Dossier: Look!

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Black angus beef cows in a grass field Stock Photo - Alamy

Mother’s Day 2025. Cards and packages of chocolates and fudge and jelly beans and penuche.  Her favorites all.  In the end, though, all she really wanted was a long drive down memory lane.  And I served as her driver, avoiding the freeway, taking the back roads, taking in the sun and big sky, looking at everything.  Look at the open fields.  There’s a farm—look at the hay.  Look at the horses.  Look at the old houses, look at the big old trees—they’re Chinese elms.  Look at that pink car: how cute!  Look at the cemetery (almost whispered).  Look at the canal, so full of water.  Look! Valley Junior High School—that’s where I went to school—I would take the bus every day.  Look, there’s 4200 West—that was my street.  Look, there’s Winder Dairy, and that used to be Brock’s farm.  Oh, look, there’s my grandparents’ house.  I loved going there.  My grandmother kept bottled fruit in her cold storage.  Oh, thank you for bringing me here.  Look, there is the church I went to as a girl; I invited your dad to come with me sometimes.  Wow, look at the size of that huge truck!  Look: cows!  Oh my goodness!  Thank you, Roger, for such a nice outing.

(Photo source: Alamy.  Used under fair use.)

The Dementia Dossier: Clocks

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No fewer than seven clocks keep time in Mom’s kitchen/dining/family room area: clocks on tables, clocks on walls, clocks on countertops, and clocks embedded in appliances.  If you count phones, the number rises to nine.  Mom seems to have adopted every sort and shape of clock, needing to give each a good home.  One never needs wonder the time.  Actually, one always must wonder what time it is, for no two clocks tell the same time. And every clock runs fast.  She sets them all ahead so that she never runs behind.  I never know if I am early or late for this or that.  To know the true time, I check my phone.  And twice each year arrives an import hour, the hour to move all seven clocks (plus the dozen in other rooms) ahead or behind one hour, on a day when she enlists me urgently to help her reset all the clocks, a vital task to be shared but not delayed or put off or procrastinated.  I fight the urge to roll my eyes at the emergency nature of the biannual ritual.  My time-turning strategy is to let the phone fix itself while I sleep.  I don’t even have a watch.

(Image by Alexa from Pixabay)