Last July we took in my mom’s dog. My father had passed and Mom finally relented, agreeing to move cross-country to live near us in memory care. Well — that’s not entirely accurate. Because she has Alzheimer’s, what she really agreed to was an extended vacation, during which she’d “try out” staying at “a hotel for old people.” The finer points of her comprehension hardly mattered; we were just relieved she’d be close by, at a place where she’d be eating (she hadn’t been) and not wandering. (She had. A lot. In fact, she crashed a neighbor’s backyard wedding.)
But what to do about her dog? Sophie is a 10-year-old Cavalier King Charles that my parents, somewhat improbably, adopted from a rescue. I say “improbably” because Cavaliers are desirable dogs, expensive to buy from breeders and a rarity at shelters. But make no mistake, Sophie is a rescue. She was found on the streets of a large city and it shows: her wary timidity, the cringing and skittering away should you approach her too fast.
We didn’t mind such behavior. We’d adopted nervous rescues before. What we hadn’t done, however, was to bring a new dog into the company of our pre-existing pets. We already had a dog, Mr. Pickles (yeah, cringe name, I know), a 12-year-old Shih-Tzu mix who rules our house with an iron yap. Not to mention Jojo the Cat: geriatric (16), cranky, and fully clawed. Mr. Pickles is my smushy-faced shadow, always ready to plant his little butt in my lap whenever I sit, or scratch the bathroom door maniacally whenever I close it for privacy. I give him waaaaaaaaay too much attention and he — not illogically — thinks he owns me. How would Mr. Pickles react to sharing me with a second dog? And what about Jojo, whose favorite pastime is ambushing Mr. Pickles out of spite? Who’s to say he wouldn’t saunter up to Sophie and, for no good reason, give her one of his trademark, razor-sharp swats? Would it shred one of her bulging, seal-like eyes?
A decision was needed, and the finger on the scale was Mom herself. The thought of being separated from her dog made her weepy and fretful, so that was that. A driver was hired to transport Sophie from California to New Jersey. We flew Mom out in advance and settled her into her new home, then Sophie arrived at our residence a week later, a little freaked out but within reason. With daily visits to memory care, we hoped Sophie would give Mom the comfort of continuity during a very stressful transition.
Thus Miss Piggy entered our lives.
By “Miss Piggy”, I mean that, when Sophie first waddled across our threshold, she had the build of a pot-bellied pig. Her stomach hung low and her torso bulged like a fat, overstuffed potato. She didn’t move much, preferring to curl up on the couch and snore her deep, piggy snores. Thus her nickname, Miss Piggy, followed in quick succession by the equally insulting Fatso, Jabba, Super-Chonk, and Chonker. Eventually, she was just “Chonk”.
The weight wasn’t Sophie’s fault. When my mother’s Alzheimer’s really set in, she forgot to feed herself. More specifically, Mom forgot the process of feeding herself. Cooking gave way to microwave dinners, gave way to plastic containers of deli food, gave way to those same containers mouldering in the fridge. Before we moved her, I was DoorDashing her tacos and BLTS whenever her aide couldn’t cover a meal. But more often than not, her aide would text me later to report Mom had deposited the orders in the trash, untouched. She needed the visual cues of eating: a prepared plate, a full glass, and most importantly, someone to eat with her, modeling the act of self-nourishment. In the absence of that, she was a good fifteen pounds underweight when she entered memory care.
When it came to Sophie, though, Mom forgot not to feed her. The aide constantly intervened to prevent the dog from consuming a third, fourth, or fifth meal. But when the aide went home for the day? Well, considering Sophie’s girth, it’s safe to say Mom made up for lost time. Even worse, she’d garnish the dog food with shredded cheese or cups of whole milk, stating confidently, “It’s what the vet ordered!” In actuality, it’s what the vet begged her to stop giving Sophie, but as so often happens with Alzheimer’s, Mom’s brain performed a slick reverse and ran with it. Which is why Sophie was a good ten pounds overweight when she came to us, and lethargic as Hell.
Not that there weren’t advantages to her laziness. We discovered introducing a new dog to Mr. Pickles and Jojo was a cinch when said dog had no interest in anything but eating and sleeping. For those first weeks, Sophie was an inert mound of fur, roused solely by the promise of a treat. Occasionally Mr. Pickles or Jojo would approach her for a cautious sniff, and we’d tense in anticipation of a brawl. But Sophie would merely raise her head, give a listless blink or two, then sink back to sleep as her housemate slunk off. Her vibe was very French ennui, heavy with boredom and the existential weight of the world.
Sophie’s new vet, however, didn’t care whether she was in a funk or no. After her initial exam, we had our marching orders: Through changes in diet and exercise, we were to bring Sophie’s weight down from over 32 pounds to somewhere in the neighborhood of 22. A shrinkage of a full third! Yowza, Chonk!
The dietary changes proved the easiest. Implementing the vet’s recommended reduced-calorie dog food was a breeze since Sophie literally ate anything (including, we were distressed to learn, the dried poops buried in Jojo’s litter box).
The taller order was the exercise. Over the past few years, for reasons tucked away in Mom’s Alzheimer’s brain, she stopped taking Sophie for daily walks. So when we brought Sophie to the trailhead near our home for a ramble, she made it only twenty feet before digging her paws in the path, sitting, and refusing to budge. We tried standing her up; as soon as we did, she planted her massive booty back down. We tried pulling on her harness, only succeeding in dragging her forward, slowly, her claws plowing skid marks in the dirt.
We had our work cut out for us.
What Persists Beyond Reason
Some days, Mom fails to recognize me and begins discussing me in the third person. “I don’t care what Johanna says, I’m not moving to New Jersey!” is a common complaint. As is, “Johanna’s a control freak! Who does she think she is, treating me like a child?”
I’ve learned it’s best not to correct her, but to roll with it. Still, I can’t help defending myself. “I’m sure Johanna means well,” I say. Or, if I’ve really had it, “Lay off of Johanna, ‘kay Mom? Johanna is awesome.”
Alzheimer’s tortures patient and caregiver alike. The patient suffers bewilderment and fear when faces and words, once recalled reflexively, become strange. There’s the anger of not being able to express oneself, of loved ones stepping in to perform tasks that, in the patient’s mind, she’s still capable of performing. Always, the patient lives with the profound unease that something unnameable is wrong. On good days, those around her deftly side-step the issue, concocting fictions that affirm, rather than contradict, her reality. They pretend her spouse is still alive and she’s twenty years younger, then nod in agreement as she spouts gibberish. Inevitably, though, there are tells: an awkward pause, a confused frown, a sidelong glance. As lost as the patient is, these still register and unsettle both her mood and cognition, like stirred-up sediment clouding water.
As for the caregiver’s torture? Well, that’s a variegated tapestry, the product of so many taut threads. Speaking for myself, basic guilt is a standout, particularly guilt over losing my patience with Mom. Mostly I lose it in small ways, like when I snapped at her for not setting the water bottle on the table when I asked repeatedly. (Pro tip: When addressing an Alzheimer’s patient, break down instructions into baby steps. As in, Open the fridge. Take out the water bottle. Now, put it on the table.)
But a handful of times I’ve really lost it, such as when I told Mom her brain wasn’t working. It’s common knowledge you don’t inform someone in mid-stage Alzheimer’s that they have Alzheimer’s — not unless you want to risk tears, rage, and agitation. Yet when Mom insisted, once again, she was “just fine”, and showed me her packed suitcase as proof she was ready to return to California, that’s exactly what I did. I told her she had a condition that made her forgetful and mixed-up, making it impossible to live on her own. She promptly denied it, then asked why she couldn’t simply take a pill and get better. By that point she was crying. She next asked what in the world was going to happen to her with such a horrible disease. By that point we both were crying.
It was a blunder I’ve re-lived on many a sleepless night, one I’m mindful of whenever I speak to her. I didn’t act out of malice, just that most prosaic of motives: exhaustion. I was tired of the relentless creativity Alzheimer’s demands, the years-long charade of it. I was tired of improvising lies for why she couldn’t go home when the truth was readily available — and, in that sense, easy.
Another reason: However briefly, I wanted Mom and I to live in the same reality. I missed occupying the same universe as her, even one that included neurodegenerative disease. I missed the Mom, the Self, that shared the parameters of my existence. Yet when I recall how upset I made her, I’m still sickened.
Thankfully, Alzheimer’s itself is a salve; two days later, Mom remembered nothing of our conversation. Another salve has been reading Dasha Kiper’s Travelers to Unimaginable Lands: Stories of Dementia, The Caregiver, and the Human Brain. There are a multitude of Alzheimer’s books about its impact upon the patient. There are far fewer about its impact upon the caregiver. Travelers is in the latter category, and examines the neuropsychology behind why caring for a loved one with the disease is so taxing. Or as Kiper more artfully puts it, “How the healthy brain’s cognitive biases and philosophical intuitions affect our understanding and treatment of people who can no longer care for themselves.”
One such cognitive bias is our unconscious belief in the “essential self”. As Kiper explains,
Early in our development we attribute to other people a permanent “deep-down self.” And though our understanding of people becomes more complex as we grow older, our belief in a “true” or “real” self persists . . .
For caregivers, the idea of a “real self” can be a double-edged sword. If, on the one hand, it encourages us to argue with afflicted loved ones in the hope of breaking through to their “real selves,” it can be a source of great frustration. If, on the other hand, we start to doubt the existence of an essential self, how can we account for the person we’re caring for? Who is it that we are suffering and sacrificing for?
Thus is the dilemma of Alzheimer’s caregiving. At the very least, Kiper’s objective, compassionate approach has allowed me to beat myself up a little less over those times I argued with Mom in a stupid effort to “break through” to the practical-minded woman who raised me — the one who nursed her own mother through Alzheimer’s.
Another cognitive bias Kiper discusses is towards a comforting narrative. Neuroscientists say the source of this bias is the “left-brain interpreter”:
. . . an unconscious process responsible for sweeping inconsistencies and confusion under the rug. When things don’t add up, when our expectations are flipped, when our environment surprises us, the left-brain interpreter provides explanations that help us make sense of things.
In Mom’s case, for example, when she wakes up in memory care surrounded by many who are non-verbal and vacant-eyed, her left-brain interpreter steps in to blame this on her daughter Johanna booking her for a stay at a really shitty hotel.
Kiper argues the desire for a meaningful and reassuring story applies to caregivers, too. To illustrate, she recounts her conversation with Elizabeth, caregiver to her husband Mitch. Elizabeth’s trials were truly vicious, with Mitch failing to recognize her in the evenings and turning her out of their apartment as an intruder (forcing her to sit outside until he’d fallen asleep). To Kiper’s surprise, just as she expected Elizabeth to acknowledge the toll Alzheimer’s had taken on her, she said something that “took Kiper aback”:
You know, I’m very grateful for this experience in a way. Don’t get me wrong, it’s a terrible disease and I wouldn’t wish it on anyone. But I’ve learned a lot about myself. I’ve learned about my limitations, and I guess I’ve learned I can survive. I have more patience than I thought. I didn’t expect to, but I’ve learned there’s still love, and love doesn’t go away. Alzheimer’s can’t take it away. And I feel so grateful.
Kiper ascribes the foregoing to Elizabeth’s left-brain interpreter stepping in to “modulate experience . . . building a neater, more coherent narrative.” She posits the left-brain interpreter “allowed Elizabeth to tease from events a meaning that hadn’t been there” when she experienced them.
To which I say: spoken like a neuropsychologist with no sense of the transcendent. This is one instance where I take issue with Kiper. Elizabeth is right. There’s still love, and love doesn’t go away.
I’m with Mom a lot. We go to the local diner for her favorite French Toast. We go discount shopping so often the check-out girls at T.J. Maxx know us by name. We plant flowers and string beads and paint the birdhouse we’re mounting outside Mom’s window in memory care. I can make Mom a hamburger for dinner, drive the thirty minutes back to her facility, escort her to her room and set out her pajamas. And when I arrive the next day, she often weeps because she believes she hasn’t seen me in weeks.
The rationalist might reason it didn’t matter whether I came to her daily, weekly, or at all. The materialist might argue there’s no return on the time and effort I’m investing in her, and so it’s wasted. But love is neither rational nor transactional — yet oh, how it’s real. It warms me when I see the delight on Mom’s face after I paint her nails a bright pink. It overcomes me every time I visit memory care and pass a wife or husband gently leading their spouse by the hand. Or late-stage Alzheimer’s patients cradling baby dolls, still enacting their love for their children.
Love isn’t a fiction told by our neural circuitry. It can’t be uploaded to some disembodied A.I. consciousness because its rules aren’t predictable. It defies common sense and — I’m happy to report — refuses to be eradicated, even in the worst of circumstances. In fact, the worst of circumstances is where I’ve found it stubbornly takes root.
Transformations
Mom is slowly declining in memory care and will continue to do so. Meanwhile, Sophie has blossomed. I wasn’t sure this would happen. For a long while, she remained our sofa-slug, doing nothing much but shedding a ridiculous, ungodly amount of fur.
(This is an ongoing issue, by the way. The upholstery is now permanently coated with Sophie fur. We spy strands of it floating through shafts of sunlight with the dust motes. You know those studies finding micro plastics in human blood? I’m positive our blood is at least thirty percent fur at this point.)
But recalcitrant canines call for tough love. On our attempts at “walks,” whenever Sophie sat down in resistance, we’d scoop up all thirty-two-plus pounds of her and carry her a ways before setting her down again. (Confession: It was usually my husband’s job to do this. I am wimpy.) Sophie would then walk tentatively forward a few feet before executing her next butt-plant, at which point we’d repeat the maneuver. All this was a tiring pain in the ass, not to mention time-consuming. People gave us funny looks as they passed, their own dogs trotting happily along at a brisk clip. Looks like someone’s not in the mood! they’d joke, and I’d fake laugh while inwardly seething with envy.
Then, at some point, the butt-plants became fewer and farther between. Not only were we carrying Sophie less, but she’d make it a goodish length between each stopping point. Eventually she was walking well enough for Mr. Pickles to join her, which not only encouraged her exercise but her curiosity: So many places to sniff and pee! And as of this post, I’m proud to report Sophie not only walks a mile or more daily, but looks forward to it, spinning around in excited circles whenever I take out the leash. From dragging her forward, we now find ourselves pulling back on her harness so that we (and Mr. Pickles!) can keep pace.
Even better, Sophie has dropped to twenty-four pounds. Good-bye Miss Piggy, hello Miss-Just-Slightly-Overweight. (Someone really needs to pitch a reality-TV weight-loss competition a la The Biggest Loser, but for dogs. I would totally watch.)
As these changes occurred, a personality emerged. Although Sophie is still leery of Jojo, she and Mr. Pickles have bonded. Like most tiny dogs, Mr. Pickles assumes he’s the Alpha, but Sophie is happy to let him take charge, trailing him faithfully from behind. Their one and only fight was when Sophie accidentally sat on Mr. Pickles — which, to be honest, was pretty funny. Sophie is more cheerful than we realized, a real tail-wagger. She commits all sorts of stealth naughtiness, like digging into the trash whenever we leave the cabinet open, then looking fixedly at Mr. Pickles when we reprimand her. (We’re not buying it, Soph. His legs are too short to even reach the bin.) Perhaps the biggest transformation is her eyes, which have gone from dull to alert, indifferent to soulful.
It’s been bittersweet watching Mom fade as Sophie starts to shine. Not that Alzheimer’s hasn’t offered a few revelations about my mother.
In Travelers, Kiper writes, “When we think of Alzheimer’s, we usually think of it as erasing the self. But what happens in most cases is that the self splinters into different selves, some we recognize, some we don’t.” As Mom’s disease has progressed, as her Self has lost its coherence, I’ve had occasion to get acquainted with parts of her that were more hidden before. For example, she’s compensated for her loss of language with an impressive creativity. “Look at those poofs"!” she exclaimed the other day, pointing at the clouds. “Look at those fluffers!” Somehow she managed to verbalize the essence of clouds without using the word. And more than once, now, I’ve been startled when my formerly demure mother makes a very raunchy, very funny joke in mixed company. How long has she been having those kinds of thoughts? What other dirty snark did she keep to herself, all those years? In some ways, I’m just beginning to know her.
On her last visit to our place, she and I witnessed something I never thought I’d see. Mr. Pickles had worked himself up into a playful spazz attack, tearing around the yard pell-mell. To my shock and delight, Sophie started chasing after him. Her hind legs were locked stiff and she couldn’t match his speed, but she was running, by God! Running joyfully, when I used to wonder if she’d ever manage a walk.
Mom loved it, laughing and clapping her hands like a little girl. In memory care, she’s gained more weight than Sophie has lost, making her face appear smoother and younger. She and Sophie are experiencing a second childhood together.
“Whose dog is that?” she asked me, with a big smile.
I know it was the Alzheimer’s talking. But a part of me likes to think that Mom, on some level, was acknowledging the change in Sophie, and the transformative power of love.
So poignant and beautiful, Johanna.
Another great essay from Johanna Polus. What a gift to be able to discuss and develop such painful and essential experiences.