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.
Tag Archives: Essay
The Dementia Dossier: Ice Cubes
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: Paying the Bills
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
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

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
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
“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
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
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
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
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.
The Dementia Dossier: Basement
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
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
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.
The Dementia Dossier: Nude.
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.”
The Dementia Dossier: Watching
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
“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.
The Dementia Dossier: Look!

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
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.
The Dementia Dossier: Shrimp
Dad used to rave at my crunchy baked breaded butterfly shrimp—straight from the grocery store bag. Mom, too. But recently she has taken to picking off the breading and eating just the shrimp. “I thought you loved the crunchy shrimp,” I ventured one evening after scraping the breading into the garbage can. She did, she assured me, but she was worried about “putting on pounds,” so she was picking the breading off the shrimp’s girth, leaving a bit on either end for a bit of crunch and flavor. After dinner, she scooped her nightly bowlful of Farr’s burnt almond fudge ice cream, settling into her recliner for the basketball game.
Image by Tesa Robbins from Pixabay
The Dementia Dossier: Niagara Falls
When Dr. Winnett fitted Mom with her new hearing aids, he promised her she would hear so well that flushing the toilet would sound like Niagara Falls. Her hearing was severe enough that she likely could barely, if at all, hear the toilet flush. She giggled after she used the toilet that first day, reporting that the toilet paper rustled like dry corn sheaves, and the toilet flush did indeed sound like Niagara Falls. She has also turned down the TV volume from 45 to 38, much to my relief. And she can hear me talk from the kitchen. And I don’t have to shout much anymore. And she is brighter and more aware and more cheerful and more engaged with company. And I only had to remind her once how to plug the hearings aids into their nighttime charger.
(Image by SunnyBlueSky7 from Pixabay)
The Dementia Dossier: Ladders and Lights
Over the course of three days, three of the chandelier’s 16 candle-flame bulbs burned out. I suspected Mom would notice the blackened bulbs immediately, and my suspicion was confirmed by the immediate appearance of a package of new bulbs on the countertop wanting me immediately to install them. At a height of 12 feet, replacing bad bulbs required a tall step ladder, hanging in the garage, carried with care for the cars and wall corners. Not my favorite job. But I would get to it—when I felt like it. My son John brought his little family over the next day for an Easter egg hunt. Three-year-old Henry helped his dad hide the eggs, then raced to find them all, then begged to hide them again, to which, of course, we acceded. When John walked in the front door, laden with children and plastic eggs, Mom immediately called out to him with a guilty giggle, “John!! Do you feel like climbing a ladder?” I all but shouted at her that I will get to it, Mom, when I’m ready! You don’t need to ask anyone else! Two days later, my brother was visiting from North Carolina. Before Mom could ask him to change out the bulbs, I grabbed the ladder, dragged it without a ding down the hallway, and climbed with an armful of fresh bulbs. The chandelier’s heat on my too-near head surprised me. I replaced the bulbs, then replaced the ladder, then went to my room to change from my jacket and tie. I heard Steven cheerfully ask Mom, as he approached from his own room, “Should I change the bulbs now, Mom?” Having desired an immediately replacement of the blackened bulbs, she had had to wait days for her slow firstborn son, who confessedly moved slower for her hurry. With new bulbs, the house has settled back into its calm fully-lit brilliance.
The Dementia Dossier: Locked Out
My briefcase and lunch bag and shopping bags hung from my wrists and hands, and I strained an arm awkwardly up to turn the handle of the door from the garage where I had parked to the house. Ugh, I thought when I turned the nob and the door remained closed, she locked me out. Again. Down went all my bags so I could pull my keys out of my pocket and let myself in. The big electric garage doors are shut all day, so no threat exists of a stranger entering the house through that door. Only I come through that door, precisely once a day after work. I have asked Mom not to lock me out, and she apologizes, with no awareness of having locked the door. I deduced that when she habitually turns on the outside garage lights (three hours before dusk) on a trip to the bathroom, she habitually turns the dead bolt to lock. Instead of complaining, I should just assume the door is locked and have my key ready.
The Dementia Dossier: Four-Leaf Clovers

My date and I sat on the sofa with a sibling and a nephew wondering how to spend the evening, whether to watch a movie or play a game or just talk. “We could sing songs!” Mom piped up. “Do you know ‘I’m Looking Over a Four-leaf Clover’?” And she launched into the 1927 song with the unsteady tin of old voice:
I’m looking over a four-leaf clover that I overlooked before.
One leaf is sunshine the other is rain. Third is the roses that grow in the lane.
No need explaining the one remaining is somebody I adore.
I’m looking over a four-leaf clover that I overlooked before.
At first, I felt mortified, but my date knows and loves my mother and didn’t mind the cute oddity. I even found myself joining in, since I, too, know the old song. Still, I felt relieved when the verse ended. We quickly moved to casting family photos to the TV. When I voiced a frustration that I couldn’t manipulate the casted photos from my “Samsung,” Mom brightened: “You want to sing more songs?”
The Dementia Dossier: A Mystery
Tidy, but not fanatical. I think that describes me: Tidy. Everything (mostly) has its ordained and proper place. My dress shirts all hang on wooden hangars in roughly color order. My 50 years of black-binder journals line my shelves in date order. My lap pillow sits in my recliner waiting to prop up my book when I sit to read. My bed is made, my vases and bowls decorate my dresser, and the floors are absent of random items. On occasion, I have noticed (or thought I noticed) certain items not in their usual places. A decorative bowl has moved two inches to the left. My bedroom blinds have been opened. My lap pillow is on the floor. (Yes, I am sure of it: things have definitely moved.) Most concerning, a recent journal volume has not been fully replaced in its spot. Sarah warned me once that Mom knew things she shouldn’t know and couldn’t unless she had been reading my journal. Knowing that Mom is looking out my window or touching my decorations or sitting in my chair doesn’t trouble me greatly—they are not real violations, just strange wanderings. But her reading my journals I cannot abide. I resolved upon a strategy which would communicate without accusing, and placed a warning sign on the last journal binder moved: Please Do Not Read My Journals. Things have moved around less since, and the journals not at all.
The Dementia Dossier: Trust Me
Twelve of our three dozen padded folding chairs reside in a neighbor’s closet to facilitate church choir practice at their house. “There are 12,” Kevin pronounced, all labeled Baker, as we loaded them into the back of Dad’s faithful Suburban. We needed all our chairs for the Friday mission reunion, and indeed used them all. After the reunion, I stacked the 12 choir chairs against the wall, leaving out a 13th for me to use with the TV tray during dinner. On Sunday I carried the 12 chairs four at a time to the car, leaving the 13th behind. “But there are 13,” she said anxiously. No, there are 12. “No! There are 13!” she wailed in near panic. I reassured her I had brought 12 chairs from the neighbor’s house—“Trust me”—and that 13th was to stay behind for me to use. The same evening, I piled the bulk pickup refuse at the curb where I usually place the garbage and recycling cans, moving them instead to the mailbox side of the house, but a good distance from the mailbox so the mailman could easily pull up his truck. Mom instructed me to make sure I didn’t put the cans in front of the mailbox, “because the mailman won’t come.” She seemed really worried. “Mom, trust me,” I insisted, “I know how to do this right.” I promised to leave plenty of room for the mail truck. She remained dubious on both accounts.
(Image by Clker-Free-Vector-Images from Pixabay.)
The Dementia Dossier: Bedtime Prayers
Once Dad could no longer kneel, or stand, or even sit up, he began saying his nighttime prayers in bed. Mom would hold his hand as he spoke to his Father God, giving thanks for the blessings of home and family and his witness of spiritual truths, and importuning the Great Intervenor to bless each member of the family, by name, in their various afflictions and difficulties. I did not like to eavesdrop on these sacred moments, but passing by their room I sometimes heard him praying for my happiness. With Dad now departed, Mom has assumed his former role of praying out loud every night from her bed. Mom loathes praying out loud in the presence of others, even to ask a blessing on our meals—for some reason she feels embarrassed and inadequate. But in the comfort of her bed and dark bedroom, she prays to the Divine. I hear her croaking gasping voice in supplication even from the distance of my bedroom, where I struggle to find my own words of faith and prayer. I do not discern her words, and that is just as well: I don’t want to invade her privacy. But I am glad to witness her faith.
The Dementia Dossier: Throw It Out
Dad’s personal papers filled filing cabinets and drawers and shelves and box upon box: study notes and drafts of his book Process of Atonement; correspondence; mission papers; journals and memoirs; travel brochures for family vacations; investment and bank statements; tax returns; and much more. As I emptied hanging file folders to shred no-longer-needed papers, I removed the clear plastic label tags and dropped them in an empty desk drawer for later use. That later use came several days later as I began to create new files for life insurance papers, home and auto insurance papers, pension and health insurance papers, family history records, and others. But when I pulled open the drawer with the clear tags, I found the drawer empty. “Mom,” I called out. “Where are all the file folder tags?” She looked confused and said nothing. I retrieved a tag from an active file drawer, and asked her where all the tags I had saved might be, if she knew. Her confusion turned to embarrassment as she confessed to not knowing what they were so she threw them away. Why would you do that? I thought. “Please don’t throw things away just because you don’t know what they are. Please ask me first.” She whispered an Okay. Scraping the dinner dishes into the kitchen trash bin later that day, I found several new clean vacuum filters in the trash. “Mom. Why are these new vacuum filters in the garbage can, if you know?” She had really wanted to clean out the hall closet, she said, [and I hadn’t done it fast enough for her compulsion,] and she didn’t know what they were, she said, so she threw them away, she said. I told her what they were and put them back in the now-empty closet.
(Image by gugacurado from Pixabay.)
The Dementia Dossier: Listening

Two men from the church came to visit Mom, one a teenager and one recently retired. In addition to the box of Crumbl cookies, they brought their love and interest and supportive smiles. And Mom gave them each her big bouncy full-bodied hugs, and they laughed, even as I cringed. I had set holding chairs out for them, in front of Mom and her recliner, and I listened from the kitchen, wanting Mom to have their full attention. Stewart and Brendan had come just a few days before Dad passed away, and here they came again to minister to Mom with words of comfort and love (and with cookies). The subject of death has been tender and frequently on our minds. Mom asked about Stewart’s son who died, long ago, of meningitis at age 10, and Stewart was coming to the crux of the terrible story, about how even in death he had felt profound love and peace and a divine Presence. As Stewart stopped for a breath, Mom looked at Brendan and asked him about his favorite subject in school. The sudden change of subject, at such a dramatic and touching moment, left me feeling jarred. What mental mechanism of Mom’s caused that? I wondered. I know she loves and cares about people. I wondered if she even heard the story, or felt the emotion in it, or if she just couldn’t focus on one subject or story line for long, no matter how poignant. Steward took the jolt in stride, understanding and not judging, loving her notwithstanding. Still, as I escorted the men out through the front door, I made a point of thanking Stewart for sharing his story, and of standing with him for a moment in his resurgent pain.
(Photo from Pinterest, used under Fair Use.)
The Dementia Dossier: Just Lazy
Plantation blinds allow abundant natural light in Mom’s living area. But after dark she feels exposed, and turns the wood slats to the shut position. I’m sure the only voyeurs are mule deer, but I understand and agree with her desire for privacy, and her caution. When I brought Mom’s dinner to her in her recliner one night, she said, “Close the blinds behind me, will you, dear?” She has a wooden yard stick for precisely the purpose of pushing the slats closed, but using it requires her to stand up from her position of supine comfort. “Well, that’s your job, Mom,” I reacted, perhaps a little too abruptly. I have encouraged her to keep up her strength and independence by doing as much for herself as she can. “Oh, alright, dear,” she responded with a tinge of chagrin. “I’m just being lazy.” All the more reason for me not to have immediately acquiesced. The next day, when I came home from work and sat down, she said, “Get the mail for me, will you, dear?” The mailman hadn’t come when she went out for the New York Times. I reminded her that her walk to the mailbox is pretty much her only exercise, and I was sure she could get the mail, there being no snow or ice or rain. “Oh, alright, dear,” again the subtle rebuke. “I’m just being lazy.” And on a Friday morning that I worked from home, she called to me in the kitchen, “Get the newspaper for me, will you, dear?” I stared hard at her and did not speak. “Normally I would get it, but you’re here,” she explained. Precisely, I thought piously through my stare: This is something you can do. “Oh, alright, dear. Never mind. I’ll get it. I’m just being lazy.” I am not about to be put to work in compensation for another’s laziness. But I suspect the issue isn’t so much laziness as it is the comfort of being helped and cared for and even pampered when one is 85 and always tired and life is lonely and every chore seems to take so much energy.
The Dementia Dossier: Smacking
Mom has never been one to chew with her mouth open, and she certainly taught me as a little boy the same principle of social and eating etiquette. But she must love, or be absolutely oblivious to, the crunching smacking sounds of certain foods. Her routine breakfast includes a bowl of dry honey nut Cheerios with milk on the side in a glass. With each fingers-full of Cheerios, the first five quick delighted chews are with the lips parted and the full crunching reverberating through the downstairs. At least that how it seems to me. After breakfast comes the Mentos Pure Fresh peppermint gum, chewed with wet delighted smacks. Over the course of months, I have spent hours composing messages of gentle and not-so-gentle confrontation. Could you please chew with your mouth closed?! An obviously rude question destined for failure and offense. Your chewing is pretty loud. Still too direct. The right message and the right delivery are important to an old person whose dementia takes the form of anxiety and sweetness and deference and wanting always to be good. The casual candor I might otherwise employ could really hurt my mother’s fragile feelings. Finally, I landed upon the perfectly balanced approach, I thought, with the benign observation, I can tell you’re really enjoying your gum. She looked slightly embarrassed, but not ashamed or belittled, and responded that she was, she guessed, and that she was chewing a little loud, she guessed, and she would try to remember not to smack. I’m sure she had not noticed her crunching and smacking before, other than within her own skull, because she hasn’t been able to hear life’s smaller sounds. With her new hearing aids, she likely will be more aware.
The Dementia Dossier: Egg Salad
Mom has refused to wear the hearing aids she bought three years ago, because the piece that sits behind the ear conflicts with her glasses frame. My siblings and I have begged and remonstrated with her—we have tired of shouting, and of the 5:30 news driving us from the downstairs—but she just turns red in the face and won’t talk. She was open, however, to the idea of new and better hearing aids. Surprisingly, Dad’s medical insurance paid a nice benefit, and she ordered hearing aids that sit entirely within the ear. “Look at the pretty clouds,” she said. “Look at all the airplanes! I can’t believe all the airplanes.” We finished our errands early, and she insisted on going to the audiologist office an hour early. “We can sit and wait.” And I insisted I was too hungry and we had plenty of time for lunch before her appointment. (I wasn’t going to sit and wait for an hour.) She relented and tried to suppress her anxiety. I asked her what sounded good for lunch. “An egg salad sandwich,” she replied. “I like egg salad.” I raised my eyebrows at her, and wanted to remark, You’ve never asked for egg salad before! Where do you think we’re going to find egg salad around here? I was thinking of a hamburger. We opted for a little Vietnamese place next to the audiologist, and wouldn’t you know it, they served an egg sandwich. Mom loved it.
The Dementia Dossier: Lights Blazing
Arriving downstairs at 9:00 a.m., Mom turns on the front foyer chandelier then hand surfs the walls on her way to her chair, switching on every ceiling light and desk lamp as she goes. It is as if she finds herself in a long dark hallway, flipping on lights a section at a time as she goes so that she can find her way to the next section and eventually her destination. She seems oblivious to the unseen lights left on behind her—they have served their purpose and now simply to not exist in her consciousness. Eventually her surfing surface ends and she settles heavily in her rocking recliner, encompassed by five burning desk lamps and 25 blazing recessed spot lights. The brightness screams at me but seems to soothe her. I much prefer the softness of natural window light, which we have in abundance, and enjoy shadow over direct beam. On the days I am home, I routinely turn each light off as I follow her throughout the house (except those light she needs in her immediate vicinity). Watching television becomes painful to my tired eyes as the room’s intense glare hits me from many directions and reflects off the dim screen. Some days I just cannot endure the light, and inform Mom I need to turn some lights off and dim others down. She relents. I have urged her to turn the lights off in the unoccupied rooms, to save on the pricey power bill, and to practice a bit of conservation. (We are recyclers, after all.) But it is her house, and she pays the power bill. One hallway lamp in particular I turn off as I pass by and she turns on as she passes by, and back and forth. I quickly tire of the power struggle and let her win the game. The light, she says, helps her see her needlepoint work. And the brightness seems to help her feel cheery and less alone. The brightness provides some physical compensation for the emotional isolation which is her new daily routine. Just shy of 10:00 p.m., she reverses her routine, turning nobs and flipping off switches as she makes her nighttime circuit toward the chair lift and the upstairs and sleeping in the dark, buried head to toe under her blankets.
The Dementia Dossier: Running and Jumping
No matter how miserable Dad felt in life, his answer to the question How are you? was always “Marvelously well, thank you.” Always. He might change his tone, moving from enthusiastic to tired to silly. But he was always “marvelously well.” Now it is Mom’s turn to answer all the retired older ladies at church when they put their arm around her shoulder and squeeze and ask How are you? She begins with a simple, “I’m fine.” But then she explains how she is not sad, that she is happy, because when she pictures her husband of 62 years in the afterlife, “I can see him running and jumping!” she says. Always running and jumping, and not alone either, but with my ebullient sister Sarah, and with his beloved sister Louise, and with his tender grandmother Natalia. They are all running and jumping. In the afterlife, apparently, people do a lot of running and jumping and who knows what else. And who am I to say that all the good souls in the afterlife aren’t running and jumping and rolling down green grassy hills? It is possible that Mom is simply willing herself to be cheerful and to think hopeful happy thoughts. Maybe Mom can’t tolerate the sadness and loneliness and is casting about for some glimmer to grasp. But perhaps she really believes it, that her husband is no longer old and sick and paralyzed, that her sweetheart is running and jumping his way to heaven, a now young and vibrant and carefree soul (though after 3½ years of caring for my old and sick and paralyzed father, I have a hard time envisioning his frolicking). But why can’t a frolicking afterlife be true? And why not believe it even if she can’t yet fully know? The very thought of her Nelson running and jumping uninhibited in heaven makes her happy, and what’s wrong with that?
The Dementia Dossier: The Calendar
Mom’s weekly hand-drawn poster-sized calendar is taped to the pantry door. I have learned to take quick initiative each Sunday evening to write my commitments on her calendar in order to avoid her gentle badgering to write my commitments on her calendar. She is smart to keep this calendar, because my explanations of events and dates and times quickly confuse and overwhelm her. As I wrote on this week’s calendar, she called from her recliner, “What did you put on the calendar?” I wanted to answer, What’s the point of me writing on the calendar if you’re just going to ask me what’s on the calendar? Why don’t you come and take a look for yourself at your calendar? She persists: “What did you write in green?” I opened the pantry door to show her, but she cannot read her poster from that far away. I sighed. “Tomorrow. 7:00 p.m. Planning Commission meeting.” That’s tomorrow? Wednesday? “Yes, Mom.” And the next night is the police department awards banquet, so I’ll be home late two days in a row. That one is written in fuchsia. I am slow to understand that her mundane uneventful daily routine means everything to her sense of stability and calm. Disruptions in daily the routine destabilize and frighten her. Add to this her loneliness. “I’m sad you’ll be gone,” she laments. “I will miss you.” And this time I actually do verbalize to her how inadequate a roommate I am for her, and how sometimes she becomes so clingy that I want to pull away. “I’m sorry, dear,” she whispers, defeated. Not only have I disrupted her routine with my green and pink events, but I have made her feel small and ashamed in her loneliness. She needs a better roommate.
Courage at Twilight: The After Words (Forgiveness)
My final (and 500th) entry in Courage at Twilight touches on forgiveness, which I hold to be the most powerful transformative life force in the universe. As awesome as are the creative cosmological forces of nature, like black holes and supernovae and spiraling galaxies and evolution, the force of forgiveness is what exalts the human soul, both in the giving and in the receiving. Living 1,262 days with caregiving and hospice provided ample opportunities for hurt and misunderstanding all around, and hence for forgiveness. My siblings have been extraordinarily kind and forgiving as I have cared sincerely but imperfectly for their beloved father and mother. They love and accept me even in the midst of my missteps. They forgive. My mother forgives me when I lose patience with her deafness and confusion, seeing me always as her darling boy. In my father’s new life sphere, he understands me fully and pierces the mists of my depression and fear: he forgives me all my trespasses. For you to whom I have been insensitive and for whom I have not been fully present in love, I desire your forgiveness. This life is not designed for perfection, but for struggle and growth. In any event, perfection I cannot do. But I can do the work of life, and I will, forgiving myself along the way.
(Pictured: flower meadow beneath Mount Timponogos, Utah, a favorite hike of Dad’s and of his children and grandchildren.)
Courage at Twilight: The After Words (Privilege)
For every day of this caregiving experience, I have been conscious of the blessings, the resources, the benefits, the privileges that shaped and enabled the experience. By “privileged” I simply mean to indicate our relative place on that vast spectrum of personal resources, our being somewhere in the in-between of those with tragically few resources and those with unnecessarily huge resources. My caregiving experience, and my father’s and mother’s experience as the cared-for, undeniable was shaped and even determined by our relative resources. My father’s pension allowed us to hire private-pay home health care and hospice, which sent aides for two hours a day, seven days a week, including holidays, for the last two years (about $30,000 per year). To be sure, the costs ate away steadily at my parents’ savings, but the fact remains that they had savings, whereas many do not. Not having this resource would have made my caregiving experience impossible, at least for me. Add to our privileges the ability to purchase a $14,000 chair lift for the staircase. While the lift was a major hit to our budget, we had the budget. Add the blessings of medical insurance, prescription insurance, and social security. Include the allowance I was given to work a flexible work schedule, which enabled me to cook healthy from-scratch meals from fresh ingredients. While I am only a small-town government lawyer, my professional knowledge and social clout did clear obstacles others struggle to break through. Our relative privileges do nothing to reduce the legitimacy or reality of my experience and my story. But they do shape that story. A lack of these resources would have dramatically altered the experience, and dramatically multiplied the stress and trauma, and I acknowledge the difficulties faced by persons with fewer resources. I am not a community organizer, and offer no social solutions, but I am aware of some of the challenges and struggles faced by many. It may be a cop out to say I would not have been up to the task without our resources, but I fear I would not have been up to the task.
(Pictured: funeral planter from the Tooele City Mayor and City Council.)
Courage at Twilight: The After Words (Grief)
Three years ago, the thought of my father’s death terrified me. Today, his death seems natural and necessary. I feel no grief, only weariness, the fatigue of daily trauma settling deeply in, the after-crisis drain. The desire to sleep and sleep and never wake up. I have studied grief, and taught grief, and workshopped grief. I have grieved my father’s dying for the three-and-a-half years before his death: an anticipatory grief; a preparatory grief; a preemptive grief. Lorry reminded me, however, that the grief will come, in all its aspects, the anger, the regrets, the deadening sadness, the looking around wondering why he is not in his recliner reading the encyclopedia, the wishing we could talk again and the wondering about why our talking was so hard, reminded me that I need to give myself the permission and the space to feel every part of it. I am not sure such wrenching grief will come. For now, I am balancing the compassion fatigue and saturation trauma of caregiving against the fact of loss, wanting just to sleep, and finding a sort of macabre triumph in knowing that I stepped into the battle: I responded to every need, every day, for one thousand two hundred sixty-two days, imperfections and weaknesses and all. And I am deeply grateful for all of you who helped.
(Pictured: a funeral planter from the church choir.)
Courage at Twilight: The After Words (Guilt)
I feel no guilt in the enormous relief I find in being freed from witnessing and absorbing the accumulated daily traumas of Dad’s last three years of life with paralysis and pain. My struggle with guilt will settle in, however, as I contemplate my struggles to be happy and cheerful—and failing—in my care responsibilities, in my silences and avoidances, in my angry and impatient outbursts and imperfect sensitivities. My resentments, certainly, were not Dad’s fault, but rather haunt me as beacons of my own depression and selfishness and lack of resilience. Still, I am determined to not be sucked into to the vortex of guilt, the shamefaced guilt which will come if I measure my imperfections instead of honor my humanness. The facts remain that I offered to the endeavor all my energies, gave all my love and found a little more, persisted through the difficulties, and prevailed. Our objective was for Dad to live and die in his own house, comfortably, happily, well-fed, in good company, with his books, with his wife and sweetheart. And we did it. We overcame. We prevailed. We protected. We cared. We endured. We loved. For Dad. For Mom. For family.
(Pictured: the funeral boutonniere.)
Courage at Twilight: The After Words (Loneliness)
We, my brother and sisters and I, navigated a week of days too filled with tasks to feel much grief—writing an obituary that attempted to summarize in two pages the long life of a great man—preparing a funeral program involving dozens of family members—writing a funeral talk I did not want to write—the mortuary checklists—settling affairs of estate—hundreds of texts and emails and messages to and from those who knew and loved him—the trickles and gushes of people through the house—all the standard tasks, which we were determined to perform in an exceptional manner. Mom will be lonelier now, without her husband and friend of 65 years. She will not hear him say as she sidles past his hospital bed, “You’re just the most wonderful wife, Lucille. I love you. We’ve been married 62 years. When you walk by, I’ll give you a hug.” I will not hear him exclaim “Roger! Welcome home!” and “What a gorgeous dinner, Rog! I just love steamed vechtables!” Walking the grocery store aisles, I passed the zero sugar mint patties, the deluxe mixed nuts, the lidocaine foot lotion, the Brussels sprouts (Mom hates them), and no longer put them in the cart. And, I felt the wrench of good-byes anew when I handed to the thrift store attendant the bags stuffed full of shoes and socks and shirts and sweats and suit coats and hoodies. But our grinding struggle is over, and Mom will experience her widow’s aloneness with a new measure of calm. A neighbor asked Mom how she was feeling, and she declared, “I’m so happy for my husband. He’s not paralyzed or sick anymore. He can run and jump and play. He’s with Sarah, and with his mother, his father, his sister Louise, and all the rest.”
Courage at Twilight: Military Honors
Christine chauffeured us in Larkin’s heated limousine to the cemetery. My brothers and sons and nephews and I grasped the handles as pallbearers and carried the casket to the open grave, stepping to the bagpiper’s I’ll Go Where You Want Me To Go, the last notes croaking to a close in the 19 degree F chill. I thanked our missionary friend for his touching musical contribution. The Air Force color guard stood graveside, their long coats, hats, and gloves inadequate for the cold. From a distance, an airman played a moving Taps on his silver horn. Two airmen floated an American flag above the casket, and one began to fold the flag in precise, crisp triangular movements, each fold finished with a deft creasing ceremonial swipe of the hand. Few knew that Dad had served in the U.S. armed forces, for he rarely mentioned his service. His orders kept him stateside as an interrogator, linguist (Romanian), intelligence officer, and airman second class, serving eight years in the Army and Air Force reserves and the Utah Army National Guard. Completing the last fold of the flag, and tucking the borders into the folds, an airman knelt in the ice and snow on one knee before Mom, held out to her the folded flag, and whispered solemnly to her, “On behalf of the President of the United States of America, I thank you for your husband’s service to his country, and present to you this American flag.” The moment for departure came, and we turned to walk away from the icy grave and the casket, covered in the most beautiful multicolored flowers.
Courage at Twilight: Missionary Choir
How different this funeral from the funeral of our father’s daughter 370 before, a funeral marked by tragedy and despair and anger, the wrongness of it all bound up in rightness of faith and family love. Now, we basked in the power of our father’s life and legacy, trusting in our convictions about the goodness of this life and reality and betterness of the life to come. We retold old stories, and told new stories, unknown to most, stories of love and service and faith. And we wept. In a powerful funerial moment, Mom called to the front of the chapel all of Dad’s former missionaries from Brazil. These 30 men and women, all in their early 20s during their missionary service with Dad, now brought their 70-something gray hair and aching knees and backs to the front, and sang Israel, Israel God Is Calling, in parts, in Portuguese: Israel Jesus Te Chama. My Portuguese-speaking sons and I joined the choir, and we felt the power of love and conviction and camaraderie echo within the chapel walls.
Courage at Twilight: A Long-stemmed Rose
We all believed it, my mother and sisters and I, that my father clung to his last heartbeats and breaths until Steven could arrive to bid farewell. We enthusiastically expressed our belief to Steven and to each other. Whether factual or no, we wanted to believe it; we wanted this mystic affirmation of a narrow sliver of hope in the midst of death. Indeed, that Steven arrived before his father’s death seemed miraculous, despite the coma and death rattle. But I soon discerned the unfairness to Steven of this testimony, which required of him wonder and faith in the face of haggard death, which broached the unanswerable question of why our father’s lucidity could not have been prolonged a mere 36 hours to allow a two-way farewell, which raised the painful reality of this last good-bye. So, I kept my belief, or my wanting to belief, silent, and sought merely to accept the circumstances we were given and to find satisfaction in having done our best with them. Steven’s trip was planned months before, but he arrived just prior to our father’s passing and left just following the funeral. After our father’s passing and our family prayer, when our small assemblage felt ready, I called the on-call hospice nurse, Monica, to report the death: Tuesday January 14 at 11:03 p.m. The official time of death, however, became the time of her certification of death: Wednesday January 15 at 00:26 a.m. She performed her coroner’s functions, wasted the remaining morphine (mixing with dish detergent and pouring down the sink drain), and called the funeral home. At about 2 a.m., the mortician rang the doorbell, bowed at the waste, expressed his condolences for our loss, entered the house, crossed the room to our mother, and delivered to her a very-long-stemmed red rose, bowing again and whispering again his condolences, which he repeated at a higher volume after Mom said, “What’s that?” After speaking comforts, he and his junior associate, dressed in black suits and burgundy bow ties, shrouded our father in white and transferred him to a wheeled gurney, where they enclosed our father’s body in a blue velvet bag with a sturdy brass zipper, and draped the whole with a blue patchwork quilt, a nice touch I did not anticipate but appreciated. And then they rolled our father’s body away and out the front door and down my wood ramps and into their Larkin van.
Courage at Twilight: I Will Not Let Him Drown
For two days family members have trickled in to visit with each other and to tell my father they love and admire and appreciate him, and to say good-bye. Those living farther away video called to do the same. But my father has been in a coma. Today he has begun to show the signs of death: a rising core temperature (at times 104 degrees F); cooling extremities; sweating and clamminess; inability to swallow (he has not eaten or drunk for six days); healthy color fading to cadaver gray; producing very little, very dark urine; not registering pain or reacting to any stimuli; gurgling on liquid in his lungs; no bowel movements. The day was calm and filled with tender expressions, and I imagined he would slip away quietly into death, his body and mind finally shutting down. The rattling and gurgling in his ragged breathing seemed to worsen. I learned later this breathing is called the “death rattle.” Finishing the hundredth phone call of the day, I could hear from across the house a concerning increase in the raggedness of his breathing, and hurried to his side, where I was horrified to find his mouth filled with a thick creamy liquid. How is he even breathing through all this goo? was my first thought, quickly followed by a frantic He’s going to drown!” I remembered seeing a rubber bulb used to suck a sick baby’s nose, and ran to retrieve it. He might be on the verge of death, but he would not meet his death by drowning, not while I was here to do something about it. Please, God, help me know what to do. Somehow, my father was managing to convulsively breath despite the liquid, and I set to sucking it out with the bulb, squeezing the contents out onto a sheet. Please, God, help me to keep him alive until Steven gets here. Ten panicked squeezes, twenty frantic squeezes, fifty fearful squeezes with the bulb. My hand began to ache, and the phlegm piled up on the sheet. His mouth now clear, I called the on-call hospice nurse, who explained the goop was a normal accumulation of mucous in an unconscious person with congestive heart failure who could no longer swallow. I felt chagrined, that this were so normal, why did a hospice nurse not tell me to watch for it, prepare me to deal with it? She ordered the delivery of a suction machine. The motor suction wand helped me remove more mucous, though much of the underwater gurgling lay deeper in his throat where I was afraid to jam the wand. While he could no longer swallow, he could also no longer gag, and I probed as aggressively as I dared to clear his throat of phlegm. I did not want to injury him or cause him pain. My sister Carolyn took over suction duty while I raced to the airport to get my brother Steven, about to arrive from North Carolina on a trip planned months previous. I apprised him of the condition in which he would see his father, hoping to soften the experience. He stood over Dad, offering his silent and whispered good-byes. Carolyn, Steven, and I began to plan the night, resolving on hourly suction shifts. I would take 11 p.m., midnight, and 1 a.m.; Carolyn would take 2, 3, and 4 a.m.; Steven 5, 6, and 7 a.m.; and I would resume at 8:00. At 11:01 p.m., as I wrote this entry, pushing one minute past my shift start-time (what harm could one measly minute do?), Carolyn came to my room and whispered that our father’s breathing had changed, had calmed and slowed. We descended the stairs and found our father not breathing at all. I cleaned his face of the last thrown-up mucous and felt for breath and stared for a moving chest, but all I saw were slack muscles and a ghostly greening face. I ran for Steven, and Carolyn ran for Mom, who descended the staircase slowly on the lift in her long white cotton nightgown. We stood around our father and husband, not quite believing he was gone, his body still hot, his body unmoving, his body covered with a white flannel sheet stenciled with blue sheep. Peace and tenderness and loss and relief and sadness permeated our own bodies, together with the one last unexpected trauma of preventing his drowning, and we said nothing until I somehow knew I need to say something, not just anything, but something sublime and holy and apropos, so I offered to pray, and I thanked God for this great man, this powerful intellect, this generous heart, thanked God for giving him to us, thanked God for having each other, thanked God for ending my father’s years of daily suffering, thanked God for a family filled with love and devotion for one another. And we let him go.
Courage at Twilight: What Will the Morning Bring?
I expected this entry to begin and end with “Dad is dead.” The night before, I turned off all the lights except for my father’s night light, a small wild-wood lamp made by my son Hyrum, and said good-night to my unconscious father who lay in the lamp’s low glow. After sunrise, I lay awake in bed with a tired father’s Christmas-like morning mix of anticipation and dread, sneaking down the stairs ahead of the children for one last check on the piles of gifts before the onslaught of squeals and flying paper, in this case ahead of my mother, in this case for one last check on my father, who I anticipated finding cold and dead. But, again, he defied my expectations of certain life’s end to flicker his eyelids and responded “Hi Rog” to my good-morning greeting. The vivid yellow urine of yesterday dripped an angry opaque red. Rosie said the red could be blood from the catheter insertion, but more likely meant failing kidneys. He drank nothing yesterday, after all. I swabbed his dry open mouth with a wet sponge-on-a-stick. I smoothed Vaseline on his flaking lips. I syringed a small dose of morphine in advance of the CNA roughing him up with rolling and changing and bathing and rubbing. From the kitchen sink I heard him mumbling, and I hurried back for him to look at me sleepily and exhort me to “Be good, Rog. Be good.” I will, father, as if I know to do anything else. Then I settled in to do what any other normal land-of-the-not-dead person does: I washed last night’s soaking pots and pans, and I set the garbage and recycling cans at the curb. Mom asked me to pray with her last night, asked me to pray with her every night. But what she really wanted was to tell me that she wants to stay in the house and not go to an assisted living facility after my father dies. I told her there was no reason not to stay at home if she were healthy and mobile. But I told her that I could not be her companion or comforter, that she would mostly be alone. She liked being alone, she said, doing her simple activities, she said, her needlepointes and word puzzles. I did not talk with her about what my own life might have in store. It’s too soon. The time for that will come, but is not today.
Courage at Twilight: Sweet Moments
The family starting calling and coming over, and undeniably sweet moments began to surround Dad and to fill the house. My sister Megan leaned over him, in tears, and gently wiped his cheeks and chin and brow, talking sweetly to him, and he awoke enough for several lucid minutes of whispered conversation as she related old memories of growing up in New Jersey. When he slipped back into unconsciousness, she summarized to him some of the more interesting stories in the day’s New York Times. Niece Afton stood by and rubbed his arms for an hour and sang to him his favorite family song, “Sweetheart of the Rockies.” My son Caleb spoke out with “Love you, Grandpa!” and Dad’s eyes fluttered and he whispered back, “Love you, too.” Caleb joined his siblings on a Messenger call, and they all took turns saying good-bye, or to wave and cry. Rosie and Veronica, two CNAs, deftly rolled him over and back in order to install a draw sheet, disposable chucks (pads), and a new brief, and swabbed his mouth with a wet sponge, and installed pillows beneath his calves to keep his heels off the mattress to avoid pressure sores. My daughter Erin expressed her love and sadness from the other side of planet Earth, and my sister Jeanette and her husband Craig and Dad’s brother Bill called me to tell me they loved me and appreciated my efforts and pledged their support. Friends Ana and Solange sang Brazilian lullabies to him, and Ana told me how she had the strongest impression when entering the house that Sarah, who died exactly a year before, was there in the house with us, with Dad, along with other loving spirits—Ana could feel their presence so strongly—and how their presence remained until just after the CNAs had finished caring for Dad and Dad had finished crying out in pain as they rolled him to and fro and we had given him more lorazepam and morphine to ease his pain and anxiety and he slipped into soft snores—then Sarah left. And I told Ana I was glad she could feel such beautiful mystical things and tell me about them because I am both utterly empty and completely saturated and can feel nothing but only flow from one task to the next to the next—there are so many tasks—and in between I can but withdraw into myself and sit curled up in an emotional corner unable and unwilling and unready to feel. The last person awake in the house, I looked at Dad in the nightlight glow and knew he was dying and would be dead within hours and saw his passing as just another fact among an infinity of sterile facts, like the ripening of the green bananas, like making mashed potatoes and sausages so I had something useful to do, like the glow of the reading lamp and the squeak of the rocking chair, and Megan’s teary eyes, and Mom’s veneer of cheer thinly covering a universe of grief and fear, and the stars shining coldly in the winter sky.
Courage at Twilight: Bedbound
I had hoped Dad’s mental acuity would return after a solid sleep, if not some of his physical strength. But his first utterances upon waking were incoherent nonsensical sentences, spoken with a thick tongue and loose jaw. His beloved Gloria came to take care of him, the day being Sunday, and he broke her heart calling her Martha and Ana. “Nelson, I’m Gloria!” she nearly wept. He strained to sit up so he could pee, but had a distorted sense of himself and his surroundings, holding the urinal absently in one hand while peeing on the bed and on the floor. She laid him back on the bed and helped him finish, then stripped and remade the bed around him. He did not want to wear a brief, but we put one on anyway, explaining that it was necessary because he had no strength to use the urinal or the toilet. Gloria and I sat at the kitchen table and faced the reality that my father and her Nelson was in serious shape, would be permanently bedbound, and we would need to reevaluate the whole procedure for his care. He adamantly opposed staying in his hospital bed in the corner of his office, so I slid away his recliner and we rolled him in his hospital bed into the recliner space, comforting him that this way he would be with Lucille and listen to her music and watch her TV programs and eat lunch together just like normal. I reported to Jessica that Dad’s condition had deteriorated quickly and severely, and that he needed a catheter because he could not manage urination in any manner. She was shocked at his appearance less than 24 hours after her previous visit. She observed his incoherence, his exhaustion, his inability to swallow a pill, his breathing and speech and loss of appetite and distorted sense of himself and his surroundings. “I wonder if he had a heart attack yesterday when I was here,” she said. Even one day before, convincing him to accept a catheter would have been impossible, whereas today he did not resist or complain, and the bag quickly filled. Though he awoke for an hour as Gloria bathed him and changed his bedding, he had been confused and incoherent, and, with the catheter in place, he now slipped into an all-day sleep. We tried to feed him pinches of food, but he could not chew or swallow. When we gave him his pills, he alternately held them in his hand, dropped them into the cup, and chewed them without water. We gave him water to wash the pills down, but he aspirated and sputtered and coughed and his breathing gurgled during his hours of sleep. I asked if he were in pain and he shook his head no. I asked him other questions but he did not respond. He ate nothing. He drank nothing. He took no medications. After observing him, Jessica thought he would not survive the day, that he was beginning to transition from life to death. She suggested I call the family and invite them to say their good-byes.
Courage at Twilight: Almost Comical
Jessica, the on-call hospice nurse, arrived just in time to see Dad lurch into an episode of unendurable chest and rib pain. His vitals were good, she said, suggesting the episode was not a heart attack, and authorizing me to give four 0.25 ml morphine syringes, plus a 0.5 lorazepam syringe (“they work better together”). After an hour, the pain suddenly let up, and he settled into a snoring sleep. He stirred at intervals, waking slightly, but not fully, mumbling gibberish, making incomprehensible nonsensical conversation. At bedtime, he could not sit up, let alone stand up, and I could see clearly the impossibility of getting him to bed. But I needed to get him to bed, to confine the mess, the increase his comfort, and mostly because I suspected that once in bed he might never leave bed again alive, and that if I did not get him into bed this night I would not be able to thereafter because of his utter weakness and my insufficient strength. He struggled to lean forward, but explained with hand motions the mechanics of how he would simply stand up and turn clockwise to sit on the walker seat, his voice strangely thick and dull and slurred, his self-perception skewed and delusional. How would I get him up and out of his recliner and convey him to bed? I wondered. I could not fathom how. Following our routine–we had to try–I hooked an elbow under his good right shoulder (the left side continued to pain him terribly) and carefully lifted, while mom lifted with her hands under his butt—and all we succeeded in doing was scooting him dangerously close to the edge of the seat, within an inch of sliding irretrievably to the floor. An idea came, and I hurried to executed it. Phase 1 involved leaning his torso back, lifting his legs, jamming the walker seat against the recliner seat, holding the walker in place with my foot, and dangling his legs across the walker seat. With a broad, two-handled sling, I sat him up and shimmied him from the chair and onto the walker seat, bumping his butt over a gap. The maneuver worked, and he sat nicely on the walker seat. As I held him upright with the sling, Mom and I managed to roll the walker backwards to the hospital bed, which I lowered as far as it would go. Phase 2 involved leaning his torso back onto the bed, with the sling behind his back and under his arms. Mom lifted his feet clear of the walker, and I stood on top of the bed leaning over him, my feet sinking deeply into the mattress. I heaved with my legs and arms—trying not to strain my back—to slide him in six-inch intervals onto the bed, but perpendicular to the bed, then used the same maneuver to turn him parallel and to slide his head toward the headboard. With each heave, his head slid backward between my feet as I stood over him on the bed. At any point, this slapstick performance could have gone terribly wrong, with Dad crashing to the floor, with my desiccated spinal discs shattering, with me tumbling off the bed, with only half of his body in bed and half out…. But for the tragedy of Dad’s situation, and maybe in spite of it, any observer would have laughed hysterically at our antics. Somehow, with just the right forces and angles and frictions and strengths and moves, we succeeded. I would not want to have to do it again, and now that Dad was correctly installed in his bed, I likely would never have to. He had cried out in pain throughout, and he eagerly accepted the morphine he had rejected for the previous 13 months, and quickly settled into sleep, a sleep from which he never fully awoke.
(Photo copywrite by Caleb Baker.)
Courage at Twilight: Unspoken Apology
Before I understood Dad’s pain, he shouted at me as I lifted gently under his left arm to help him stand and turn for bed, and I shouted back at him to not shout at me, making sure to shout louder than he. Lying panting in his bed, he explained the horrible pain he was having in his chest. Understanding his pain helped me find more compassion and patience, helped reduce my resentment, helped me speak softly and forgivingly, and I thought in the night of the apology I would offer him the next morning. I’m sorry I shouted at you, Dad. Can explain something to you? Just let me get through it, and then you can respond. I have always felt afraid of you and intimidated by you. You were always so smart and so strong and so successful, a superstar to so many, and I wanted to be all you are but knew I would never be. I have always wanted to make you proud, but you never told me you were proud of me. I have always wanted your love, but you never told me you loved me. I always felt afraid of your disapproval and disappointment. And so, I feel destroyed and annihilated when you shout at me or become angry or disappointed with me. And now, at age 60, I shout back or become defensive, only to stay alive. Always in my life I have shrunk to be as small as possible, I have shrunk into shame, I have sunk into depression, for I am a man who has depression. But, I don’t want to die, Dad, and to not die when you are disgusted with me or disappointed with me or angry with me, I fought back. That’s what is happening. I’m trying to survive, to stay alive, to not die. But I can see that you weren’t angry with me last night; you were in severe physical pain, and so I apologize to you for shouting back at you when you shouted at me, because you really weren’t shouting, you were just crying out in pain. I’m sorry. But in the morning, I found him too feeble and in pain and ashen-faced and miserable and weakened, and could not bring myself to add to his suffocating burdens. My apology may have brought understanding, but would have added to his heaviness and suffering. Instead, I listened to his troubles and called for the hospice nurse to come, on a Sunday, and administered the morphine, and did what I could to safeguard his comfort.
(Pictured: boot hill grave in Peoche NV, the small mining town of my father Nelson’s grandfather Nelson.)
Courage at Twilight: Cracked Ribs?
Wishing Dad good luck for a good sleep did not work. He awoke with pains that seared and branded and made him cry out when he adjusted in bed, pains that worsened over the next day, pains he hissed ashen-faced that he could not deal with, pains that made him cry out and shout when helping him move to the toilet or to bed. He thinks he cracked a rib when I used the gate belt after he fell, to bring him his hands and knees, and then up to the toilet seat. Jessica, the on-call hospice nurse, tells me over the phone to give him a 0.25 ml oral morphine syringe from his E-kit to see if it helps with his pain, and then another syringe if it does not. I will do that, I say, and I ask her to come to the house anyway, on a Saturday, to hear directly from him what he is experiencing so I do not bear the burden of correct translation. We could take him to the hospital for an x-ray, but the experience of pain and exhaustion of getting him there and undergoing the procedure would bring no gain: there is no treatment for a cracked rib but weeks of rest and pain management. I cracked four ribs several years ago in a mountain biking crash, and I well remember the weeks of agonizing searing pain, and how grateful I was for oxycodone, without which I would not have slept, the more so because a week after my wreck I camped for three weeks with 34 boy scouts at the National Jamboree, a trip two years in the making. So, he will try the morphine. And he reported that the 0.25 ml dose did dull his pain, but was bitter-tasting, made him drowsy, made his body tingle, and caused some nausea. But it did dull his pain. This dosage, or even double, he can safely take for pain every hour, says Jessica. She will have a fresh supply of morphine sent over, which is much easier to obtain for a patient on hospice than not, she says. I felt relieved the low dosage helped. He, too, felt relieved, from the worst of the pain, and was grateful.
(Pictured: Boot Hill grave marker in Peoche NV, the mining town of my father’s grandfather.)










































