Please Hold

Today I finally awoke under my own roof, in my own bed, after a whirlwind series of emotional and travel adventures. This morning, I ventured outside to walk the dog, I made coffee, and then the three of us–me, the dog, and an enormous slab of wedding cake–promptly returned to bed, where we have been ever since. Yes, I know it’s a Tuesday. But after the ten days I just had, I am taking a Sunday instead.

As my previous post indicated, my dad’s “routine” eye surgery resulted in a catastrophic outcome that took two ophthalmologic surgeons and an anesthesiologist totally by surprise. It was like driving to the grocery store and running over an IED–devastation, horror, and total shock. Suddenly, my mother’s primary caretaker was both physically incapacitated and emotionally devastated, though he was too stoic to show it overtly. My mother is slightly more demonstrative (sarcasm!), and she swung violently between compassion for my dad, fear at an uncertain future , and indiscriminate anger at various people–me, my sister, even my dad–for various infractions–patronizing her, being disrespectful, taking the front seat of the car. That last perpetrator was my dad! Returning home after two days in the hospital as a newly one-eyed man, he had the audacity to try to take the front passenger seat. (He is 6’3″ and she is 5’3″, so where she gets the idea that she should sit up front like the Queen of France, I do not know.) My mother was so focused on her own victimhood, and also having to pee (despite my sister begging her to go before she got in the car), that she completely forgot the nature of the task at hand: driving my dad home from the hospital.

Thanks, Alzheimer’s!

It took days for the New Reality to sink into her memory, and even now she routinely forgets that my father only has sight in one eye. He can’t bend over due to concerns about the pressure in his eye. He can’t see out of one eye, so his depth perception is fucked up, undermining his ability to perform routine tasks. His meds have been changed, and his tremor is worse, so sometimes he can barely feed himself. He can’t drive. He is in pain. And for days, his eyelid and surrounding tissues were swollen and black. Not the red and purple people mean when they say “a black eye,” but LITERALLY black. The sclera (white of the eye) is still cherry red, and he literally weeps blood. And my mother looks him right in the face, without recognition of any of this, and chastises him for not being able to help her pick specks of dog food off the carpet or go to the store to get her the right kind of cereal.

Fuck you, Alzheimer’s!

My dad’s surgery was on a Thursday nearly two weeks ago. My sister called with The News about 3 PM, and it’s been crazy ever since. I packed myself in 10 minutes, drove across town to drop the dog at my parents’ apartment, then pushed on to the hospital, where I stayed with my mother until 10 PM that night. The next day, we were back at the hospital by 9:30 AM, an epic feat considering that Alzheimer’s has completely ruined my mother’s executive function. She cannot plan and complete a task, so the simple request that she dress herself and eat some cereal drifted into efforts to clean the apartment, organize a cabinet, and repair a tear to the newspaper. It’s like having a toddler, but a toddler who weighs 130 pounds, knows they are legally an adult, and can push your buttons like nobody’s business.

We took my dad home that night, and I stayed over to attend to him. The next day, my sister and I worked in shifts, which enabled me to escape for a bit. I went to my friend’s bridal fitting, and then we visited a mall to buy makeup like Fancy Ladies. We are bad at malls, and I will write about this excursion at some other point. $260 worth of makeup later (WTF!), I headed back to the loony bin to spend another night with my folks.

I spent Monday & Tuesday grinding out a big project, Wednesday I got caught up on the anatomy of the heart and blood vessels for the class I’m taking, and Thursday I had an all-day meeting in the city. Thursday night I went back to my folks’, stayed over, then left Friday morning at the crack of dawn to fly to New England for my cousin’s funeral. Two days of celebrating my cousin’s life, crying at his grave, and catching up with extended family, then back on the plane to fly home. (More on this later.) I went straight from the airport to my friend’s open house on the eve of her wedding. Then back to my parents’ apartment, where I had stashed the dog but was also supervising my dad’s care. This brings us to Sunday.

My friend married the love of her life two days ago, and it was a wonderful day from start to finish. I had some drama with my parents in the morning but was finally able to extract myself around noon and head to my friend’s house to help with wedding prep. It was a day of firsts–I made my first bridal bouquet and my first groom’s boutonnière, and I did my first-ever bridal up-do. It all came together beautifully, though thankfully the bride’s aesthetic was “you tried hard, and it will look good from a distance.” The party went late, as all good parties do, and I finally arrived back at my parents’ apartment at 2 AM yesterday. I awoke about two hours later in extreme pain. The booze I consumed at the wedding must have anesthetized me from feeling the damage I was doing to my body by being on my feet in peep toe stilettos for 8 straight hours. My toes looked like sausages, my feet and ankles were swollen and sore, and I felt like I was 150 years old. As of today, the swelling is down in all but two toes, but those little piggies remain completely numb.

Bad at malls, also bad at high heels!

A few more hours of fitful sleep, and then I was up and out, Ubering to retrieve my car across town, running errands for my folks, assembling post-wedding flower bouquets for display at my parents’ retirement home, walking their neighbor’s dog, and then finally

finally

finally

driving myself and my pup HOME.

As an introvert, I need a lot of downtime after being around people in emotionally charged situations, whether they are sad or angry or exuberant and joyful. I have had all of these in the last ten days, and I am spent. The list of creatures I can stand to deal with is currently counted on one hand: my dog, a few dear friends, and another piece of wedding cake.

Everyone else: Please hold.

I will be with you shortly.

 

Holiday

Plans are firming up to take my mom to my cousin’s memorial service next month. My father gets a pass, because he will be recovering from cataract surgery. So our party will consist of me, my sister, her two children, my mother, and my mother’s Alzheimer’s, which is so intrusive, it needs its own suitcase.

Last night, I went over the plan with my parents–well, with my dad while my mom looked on:

  • The dog and I will stay overnight with them and help my mom pack in the evening.
  • The next morning, the dog will stay with my dad, and I will drive my mom & I to an out-of-town airport (cheaper flight) at the asscrack of dawn.
  • We will meet my sister and her two children at the airport and fly to a city close to the rural memorial service.
  • We will get in about 9:30 AM, rent two cars, and drive to the beach. (My mom loves the ocean and doesn’t get to see it much.)
  • Burial service that afternoon, memorial service the next day.
  • We are all staying in an Air BnB, along with my weird uncle.

My mom really struggled with the rental-house concept. “I don’t want to stay in someone’s house,” she said initially. Later, it became clear that she understood the concept of “rooms” only in the context of “hotel rooms,” and she became confused and angry at the thought of my nephew sleeping on a couch.

“He’ll be all by himself?” she asked plaintively, over and over. I think maybe she was picturing him in a hotel lobby. Who knows.

The other problem with this plan is that we know–including the kids (ages 11 and 14)–that my cousin killed himself. But there are some relatives–we’re not sure which ones–who do not know. My cousin’s widow apparently wants to keep up the fiction that an athletic, 49 year old man with Crohn’s disease mysteriously dropped dead, out of the blue, in his own home. Among those who don’t know, and are not supposed to know, are a bunch of kids. So, we now have to have The Talk with my nephew, rather like Jewish parents do with their children about Santa: “You cannot say anything to the other kids.”

My niece is rock-solid, unswayed by peer pressure or a desire to impress. My nephew is more of a joiner, and I could see him divulging if he was trying to impress an older kid, but I think fear of punishment will keep him in check. The wildcard is my mom. She can’t remember anything, including, increasingly, my name. (She often cycles through several possibilities–dog, niece, sister–before remembering the name she gave to me.) She will undoubtedly ask, “What is this?” or “What are we doing here?” repeatedly (as in, every 2-5 minutes) while we are at the burial and memorial services. She will very likely forget that my cousin is dead and ask after him to his father and widow, at his funeral. (This happened at another funeral she attended. It is very awkward.) And she will likely announce, with a parrot-like vigor, “B* killed himself, right?”

She kept doing this last night, as though we were playing trivia, and she finally got an answer right.

“He’s dead, right?”

“Yes, Mom.”

“And he killed himself, right?”

“That’s right.”

The show “Roseanne” (which I LOVE) got many things about family life exactly right, including what it is like to deal with elderly relatives in times of grief.

If you have this exchange more than a few times, all of the appropriate emotions–shock, horror, grief–get displaced by frustration, irritation, and a fervent desire to end the interaction. Thankfully, I don’t think anyone has told my mother the circumstances of my cousin’s death: he shot himself with his own gun a few hours (not the next day, as I first thought) after being released from a psychiatric hospital. His wife found him when she got home from work.

(If you’re wondering what kind of psychiatric hospital releases an in-patient with suicidal thoughts into his own custody, without even notifying his spouse, when there is a gun in play, the possible answers are: A) The one my cousin was in hours before he shot himself; B) The one I hope his widow sues the fuck out of; C) Both A and B.)

When you really sit with it, the horror is breathtaking. Maybe I should thank Alzheimer’s for turning my cousin’s suicide into just another incidental detail, like who is running for president or what Mom needs at the drugstore. My mother writes information like this down on sticky notes, and we find them everywhere–on mirrors, lining every cabinet door, inside every pocket. There is no emotion with it, just cold information: “Cough drops, Shampoo, B*’s death. Suicide. Need paper towels.” And, just like a Post-It, none of it sticks.

If a tree commits suicide in a forest, and no one ever talks about it, did it really happen?

The irony here is that the silence and stigma surrounding my cousin’s suicide is mirrored perfectly by the silence and stigma surrounding my mother’s dementia. My cousin’s wife feels that it is disparaging of her husband’s memory to acknowledge that the pain of his depression and Crohn’s, braided one into the other, eventually became too much to bear. And my mother is mortified that she has committed the grave sin of contracting a fatal brain disease, while my father is in denial about her cognitive abilities. Just last night, he excoriated her for not knowing what kind of coffee–regular or decaf?–she put in the coffeemaker. Of all the things she cannot remember–who’s dead, where she lives, whether she has grandchildren–he thinks that’s information she’s got filed and ready for retrieval??? Regardless of the context, my mother’s condition is a Dirty Family Secret.

My sister is coming around to the idea that we should be more open, even with strangers, but she treads more lightly than me. I am pretty upfront about it, if my mom isn’t within earshot, because people are kinder and more helpful if they know what’s up. Like, for instance, the post-op nurse who kept giving instructions to my mom, but not also to me, about caring for my dad after his hernia surgery. Or the ladies we lunched with at a friend’s birthday party, who treated my mother like furniture because they didn’t know what to make of her inability to remember the finer details of the table’s smalltalk.

Gate agents, flight attendants, waitstaff, funeral guests…together my mother and I will run a gantlet of socially awkward encounters perched always on the edge of rage. This trip is shaping up to be one of the longest, strangest weekends of my life. Only the walk on the beach will afford a moment’s rest and contemplation, when the sound of the waves drowns out the yammering questions brought forth by my mother’s disease.

And the brisk winds focus her attention on seashells and grandchildren and the gorgeous feeling of bare toes in wet sand.

And the vastness of the sea brings all our little tragedies down to size.

 

Suicide is preventable. It should always be taken seriously. If you need help, or know someone who does, call 1-800-273-TALK (8255) anytime, 24/7. http://www.suicidepreventionlifeline.org/

A New World

Last night I got the saddest, scariest email from my dad. My parents were dog-sitting a terrier named Oliver for some neighbors in their retirement community. Everything was going well. My mother took Oliver for a walk, and then she returned to the apartment…

Alone.

I asked her where Oliver was and she did not know what I was talking about. I pressed her, and she vaguely recalled taking him out but did not know where he was or what she had done with him.

When I read this, my heart fell into my stomach. More precisely, I had three simultaneous reactions:

  1. Terror: What the fuck did she do with the dog??? My parents frequently take care of my dog, who is often the only thing tethering me to this life. What is there to keep my mom from losing my dog too?
  2. Vindication: Every time I visit my parents, there is a fight about this very issue. I will not let my mother walk my dog until she proves that she has her cell phone on her and that it is turned on. I am terrified that my mom will get lost and not be able to find her way back. At least if she has the phone…well, let’s be honest, it just means that a kindly stranger who searches her person might be able to call us, because my mom often looks at her phone like it’s a moon rock. Anyway, every time–Every. Single. Time.–it is a struggle to find the phone. We have a locator device for this purpose, but sometimes I have to search the pockets of a dozen sweaters and jackets in the closet before the phone turns up. Meanwhile, my mother becomes enraged at the implication that she is not capable of walking a dog without intervention. She hurls accusations–you think I’m a blithering idiot, you don’t respect me, you don’t love me–but, every time, I stand firm. And every time, I end up feeling like an asshole. Not anymore.
  3. Sadness: Beyond sad. For my mom, for me, but mostly for my dad, who is losing his love of 50+ years one missing cell phone/purse/dog at a time. He sounds so defeated. When I asked him how he felt about her decline, he said, “Well, I guess it’s just part of the marriage deal.”

What happened? He thought she would be ok walking the dog by herself, and he just wanted 20 minutes alone to go to the dining room to fetch their dinner in peace.

I already cannot allow her to go to the dining room alone. She goes with a list that says buy A, B, and C but brings home X, Y, and Z. Or she becomes confused by the menu offerings or gets into an argument with the manager over whether or not corn is a vegetable. Her short-term memory loss seems to be escalating. Today she had no idea what to do with the trash or recycling. Her world is shrinking by the day.

And she knows it. That is the horror of Alzheimer’s Disease. Initially, at least, you know the totality of what you don’t know. It must be terrifying, like waking up stupid-hungover in a strange place with no idea how you got there–several times a day. Being around my mom is kind of like the movie “Groundhog Day,” except that her story doesn’t reset after 24 hours. It resets every couple of minutes, and when it does, she’s lost your dog.

I can’t tell which is the greater fear–that my mom will lose my dog or kill her altogether. My mom likes to sneak my dog people food as a form of rebellion against what she imagines to be my dictatorial rule. But we’re not talking about bits of cheese or meat, we’re talking about slabs of chocolate cake so large they would kill my 12-pound pup. Despite loving my dog immensely, my mom has also looked right at her and said, “Whose dog is that?” One time my mom tried to return my dog to a neighbor’s apartment, but thankfully my dad caught her in time. So, with good reason, I live in fear that I will lose my dog at my mother’s hand. And then I will lose my family, because I will never be able to forgive her for that.

It turns out that Oliver’s owners returned home while my mom was walking him, and they ran into each other outside. Oliver was surely glad to see his mommy and daddy, and my mom enthusiastically handed him over. Then she returned to her apartment–which is a goddam miracle in and of itself, because at some undetermined point in the future, she won’t be able to find it anymore. By the time she rode the elevator one floor and walked perhaps 60 paces to her front door, she forgot not only that she had returned Oliver, but that he had ever existed in the first place.

As far as my mom was concerned, the world was born the moment she walked in the door.

 

A Lack of Emotional Concern

a·no·so·di·a·pho·ri·a

(ă-nō’sō-dī-ă-fōr’ē-ă), Indifference, real or assumed, to the presence of disease, specifically of paralysis. [G. a- priv. + nosos, disease, + diaphora, difference]

I learned a new word today: anosodiaphoria. It is a medical term, not even in the Oxford English Dictionary, that means “indifference, real or assumed, to the presence of disease, specifically of paralysis.” It was coined by Joseph Babinski, discoverer of the famous Babinski, or plantar, reflex in which scraping the sole of the foot determines spinal cord damage. Babinski first noted anosodiaphoria in 1914 in a few paralyzed patients who were all “meh” about their paralysis. Another, more general definition describes anosodiaphoria as a “lack of emotional concern.” A recent medical paper on the subject is titled “Blissfully Unaware.”

My dad and I took my mom to the doctor today–specifically, to the neurologist to receive the results of her annual memory evaluation, an extensive battery of tests performed last week. It was pretty much unnecessary, given what we know:

  • That her mother died of Alzheimer’s.
  • That her sister had early-onset Alzheimer’s and was robbed of seventeen years of life starting in her late 50s.
  • That my mom gets lost and can’t drive a car and can’t remember why (two accidents).
  • That she has trouble forming new memories.
  • That today she asked us at the breakfast table, as we were leaving, twice in the car, and again in the lobby of the doctor’s office, “Now, what is this for again?”

My mother’s neurologist is a young man of south Asian ancestry with luminous brown eyes and a quiet, fastidious mien. He spoke in soft, measured tones, and his approach to delivering news to patients in layman’s terms was studied, as he though he carefully considered each ten-cent word before he said it. His hipster bowtie was flawless.

After addressing my mom’s mysterious dizziness (I’ll tell you about that some other time), he summarized his colleague’s report. Memory exams are administered by a specialist, and the scientific literature has shown a preference for having the same doctor administer the tests over time, such is their subjective bias. According to the neurologist, the exam showed improvement in some areas, decline in others, and stasis in still more. It struck me that he was building to something, but was remembering back to that day in medical school when they explained how using certain words can cause your patients to shut down. “Cancer” is one of those words. “Alzheimer’s” is another.

Last year, this same neurologist told us my mother had “mild cognitive impairment,” but I knew there was nothing mild about her deficits. He described her condition as a “gray area” between normal and not normal and offered hollow assurances that lots of people find themselves there who do not end up with dementia. Today, he was a little more assertive.

Overall,” he said, “there did seem to be a mild trend of decline.”

Such gentle language: the passive voice of “there did seem” rather than “you have.” The uncertainty introduced by the use of “seem.” It’s not a definitive, yes-or-no thing that has happened like, say, getting impaled by rebar that has fallen off the back of a speeding flatbed. Rather she’s just experiencing a “trend.” A trend is a process, a direction, but not necessarily a destination. The cruelly optimistic implication is that trends can be reversed. Furthermore, hers is a “mild” trend, like warming springtime temperatures or rates of marijuana use by senior citizens.

But the neurologist was just warming us up. My mother’s test results now point to “a mild stage of something more progressive, likely some form of dementia.” Whew. That’s a relief! I thought he was going to sell us car insurance there for a second. Dementia, yes, we’re familiar. My mother recently asked my dad if Jeb Bush was president.

Lest we get hopeful, though, he then offered that this form of dementia was likely not of the vascular type. My mom, who did a fantastic job of following along, interjected and asked for clarity about the form of the disease that she does not have. After explaining how some forms of dementia are due to blockages in the vascular system that nourishes the brain, the neurologist finally reached the crescendo of his plodding andante.

“The change in those domains [that she exhibited in her exams] are more associated with Alzheimer’s.”

Well then.

It was the first time that word had been used by a clinician to describe my mother’s condition–the closest we have gotten to the Dreaded Diagnosis thus far. She took it like the taciturn Midwesterner that she is: stoically, silently. As far as she is concerned, there is nothing more to be said, and nothing more to do.

A few hours later, I asked my dad if I could read the report, which the neurologist had promised was written in “accessible” language. That’s when I learned my new word. And that’s when I realized how random and fragile the art of neurological diagnosis really is.

The report found that my mother’s memory did not decline. Great news! Except that her memory was “poor” last year and remains so, as does her learning function. She did experience decline in language (the ability to come up with the right word on queue) and in executive function (the ability to plan, organize, and conduct a task to completion), which I have often summarized as my mother “falling off a cliff, cognitively speaking.”

She asks sometimes about words–today she mixed up “affluent” and “effusive”–but thankfully her ability to her express herself has not yet been compromised. We have noticed the executive function thing, though. That’s when your mom is supposed to be getting dressed for her Golden Anniversary party, a fancy catered affair attended by fifteen out-of-town guests that was months in the planning and has cost thousands of dollars, and the guests have arrived and are all downstairs waiting, and she disappears into the bathroom for too long, and when you find her, everything in the bathroom closet is on the floor, because she started doing her makeup but went looking for a Q-tip, which she has in her hand, and then she got sidetracked somehow, and now she doesn’t really feel like “going out to dinner” anyway.

Her recent evaluation was neurological but also vaguely psychological, in that the clinician endeavored to understand my mother’s mood. Unfortunately, the test was conducted the day after said Golden Anniversary party weekend, when my mother was still high on being around people she loves for two straight days. She did great! The neurologist reported a “confound of any potential mood changes,” and he smiled adorably when he told us there was no sign of depression.

Really.

There was no sign of mood change when my mother raged at me and the front desk lady for no reason on the night of my father’s surgery?

There was no sign of mood change when the anniversary guests were waiting and my mom announced to my dad and me that she didn’t want to go, that she had nothing to wear (she said this while wearing a brand-new, custom-tailored Talbot’s suit purchased specially for the occasion), and that she wished my father was married to someone else so he could take that lady instead?

There was no sign of mood change last night, when my dad and I emptied the kitchen pantry trying to find the dog’s bowls–my mom hides things–and had the audacity to discard her priceless collection of 50 carryout containers and some of the 10,000 cafeteria napkins she’s hoarding, and in response my mom put herself to bed, hilariously fuming, “Fifty years of running my kitchen clearly aren’t good enough for you, so I will never go in there again.” No sign at all?

Not even on Christmas eve, when my mother told me that she thinks about killing herself every day?

Such a relief! And really good to know.

The doctor who did the report also noted that she showed signs of anosodiaphoria related to her condition. My dad and I looked it up together, and we puzzled over its application to my mother’s situation. But on the drive home, I think I figured it out.

My mother can’t remember my name, and someday soon she won’t remember me at all. But so long as she is still herself, she will never, EVER, think that it is ok to disclose the dark thoughts that plague her mind–and certainly not to a doctor, a person in authority, a man. She thinks her dementia is her fault, a terrible, embarrassing failure of her own making. And, while she will admit that it is real, she would rather die than talk about how it makes her feel. Hence whatever it was that she said or did to indicate anosodiaphoria, or “indifference to the presence of disease”: a shrug, a refusal to answer, or perhaps a firm statement like, “It is what it is.”

This isn’t the cheerful acceptance of the green-tea-swilling, yoga-pantsed, meditating Buddhist. No, this is the grim resignation of Ohio farm folk, people who canned their food, darned their socks, and survived barren winters in metal sheds while their babies died of typhus. That’s an actual thing that happened, to my mother’s great-grandmother, but the story’s impact on subsequent generations was profound. There are other stories too–like, the story of how my mother’s grandfather was such a cheap sonofabitch that he wouldn’t let his 40-something year old wife have her baby in a hospital, and he refused to summon a doctor until just before she bled to death. And the half-born baby died of asphyxiation. And my mother’s mother witnessed the whole terrible scene as a girl, and she never told her own daughter, my mom, that she loved her, until the Alzheimer’s devoured the part of her brain responsible for remembering that our people don’t show emotion. Yes, grim resignation is coded in our DNA.

Anosodiaphoria. You could tell, the doctor thought it was curious that my mother doesn’t seem to mind that she is losing her mind. In fact, she’s mad as hell, and since there is no rational place to direct her anger, she takes it out on everyone around her. I feel for her, I really do, at least in the abstract. But in the moment, I often find myself incapable of accessing the empathy, kind words, and genuine emotion I would bestow on literally any other human being in the same situation, up to and including Saddam Hussein.

The reason is because I still can’t quite separate out the fragile old woman my mother is at present from the passive aggressive nightmare she has been all along. As long as I can remember, her default setting is to cast everyone else as her tormentors while she bullies us all into compliance. My whole life, no matter what she said or did, no matter how terrible, I never received a single word of apology from her. And any suggestion that perhaps some elements of my childhood might have gone a little better (or just, you know, my failure to empty the dishwasher in a timely fashion) always resulted in outrageous, sarcastic accusations designed to pathologize any utterance of dissent: “You hate me. You think I’m the worst mother ever. You think I’m a monster.”

It’s a brilliant strategy, actually, because every fight ended with me apologizing. “No, Mommy, I love you, I’m sorry, I love you, I do, I’ll empty the dishwasher right now, I’m sorry, I’m sorry, I’m so sorry.”

At present, this tendency manifests as my mother’s refusal to offer any hint of apology when her memory problems inconvenience other people–like, say, when she compulsively threw away a bag containing $70 worth of hearing aid batteries, or she made me late for work when she hid my car key. Instead, she gets angry at us. We don’t respect her, we don’t care about her, we ignore her–when really, our entire lives revolve around her. My sister says I should pretend our mom has the words “I’m sick” written across her forehead. But what I know is true is that she was sick long before she lost her mind, and I am having trouble forgiving her for that.

Still, I rally. I take time off work, I show up, I eat shit for as long as I can stand it, and then I run away, often after saying something I regret. Then I hate myself for being unable to stay perfectly poised in the exact fraction of a moment where my mother lives, with no before or after, no old wounds let alone fresh ones, as though last night’s Great Tupperware Meltdown and the last forty years never happened.

I admit it, I have become hard. I exhibit a lack of emotional concern. I am indifferent to the presence of her disease.

I guess I have secondary anosodiaphoria, if that’s a thing. But none of us is blissfully unaware.

 

Self-Arrest

I have never climbed a glacier (though I did slide down one on my butt in high school!), but my understanding is that one has to be prepared to conduct a “self-arrest,” whereby one uses an ice axe to stop a potentially fatal slide into oblivion. That’s kind of what happened this Christmas.

As I’ve discussed previously, I’m not a huge fan of Christmas. The holiday involves too much waste, too much self-indulgence, and not enough actual spirit-of-Christ giving. It has also been historically fraught in my family. I won’t go into that here, just trust me. I’ve earned the Girl Scout “Ruining Christmas” merit badge too many times to mention.

This year, I did Christmas differently, albeit somewhat unintentionally. On Christmas eve, I departed my family gathering early–for a booty call. It was fucking awesome, in the most literal sense. On Christmas day, I elfed with Santa and my sister-elf at a rehab center filled with ill and lonely people. Yes, “elf” is a verb, meaning, “To assist Santa by handing out gifts, greeting people, singing carols, and feeling palpably grateful that you are not a patient in that terrible place.” That afternoon, I played host to a friend who unexpectedly arrived at my house, pregnant with weariness and no place to stay. We played tourist and visited my parents, then we met up with another friend for Thai food and booze. Over the next few days, I texted with far-away friends, I went to a play, I went for a hike with a second surprise houseguest, and I laughed so hard I nearly peed myself on a public street.

Doing good for others was, as always, a soothing experience, which helps to explain nursing’s appeal for me. And being with people who appreciate me for who I am was soul-saving. After months of feeling like I am sliding into oblivion, slipping the bonds I share with everyone who cares about me and spinning not off a glacier but off the planet altogether, the choice to go my own way–to serve my own interests–this Christmas gave me a sense of purchase I haven’t felt in a great, great while.

I can feel myself starting to slip again already. The booty call was great, but I wish I could meet a guy who wants to take me to the movies. My friends are doing well, but sometimes it feels as though they are leaving me behind. And being with my parents the day after Christmas made me very sad. I worked a jigsaw puzzle with my mom, and it felt more like occupational therapy than a shared project. “I can’t see it. You do it,” she said time again, as she struggled to fit a piece into its place.

But still–it feels good to know…

that self-arrest is possible,

that sometimes I can make the pieces fit,

that there are people who can still make me laugh and, despite my precarious attachment to this world, who can help me to enjoy the view.

self arrest
Maybe when this guy gets safely off the mountain, he can be my boyfriend.

 

Coloring

My father had surgery on Thursday. To help pass the time, I brought my adult coloring books, which my sister, mother, and I set upon with enthusiasm. I am good at coloring–I stay inside the lines, I assemble soothing palettes, and I mix the colors to create depth and interest as best I can.

My father’s surgery was not the most stressful part of the ordeal, even though it involved general anesthesia for a 78-year-old cardiac patient. The stress came from managing my mother, who has dementia. Her diagnosis is “mild cognitive impairment,” but that is a very generous assessment. Someday, when we donate her brain to science, they will tell us what we already know: she has Alzheimer’s Disease.

Alzheimer’s involves the buildup of tau (a sticky plaque) in the brain that disrupts normal function. Memory problems are the first to manifest, but eventually these evolve into serious cognitive problems, and finally the brain forgets how to manage involuntary processes like breathing and swallowing. That’s what finally kills you. But the long, slow death is not the evil of this beast. To be brutally honest, Alzheimer’s makes you hate the person you love and then, for hating them, it makes you hate yourself. It is a perfect circle of undoing, where no one is who they are, and love is just out of reach, because you can only have the same conversation

over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over

about your dead friend or your broken heart or whether or not you’re thirsty, before you want to scream.

There are videos online that find Alzheimer’s caregivers rediscovering their loved one’s true selves. I envy them, for those moments and for the relationships they obviously used to have. Unfortunately, my mother has not settled into to some enlightened state of childlike wonder, mirth, or calm. Rather, her default setting is a cocktail of negativity, low self-worth, and paranoia that emerges when she gets frustrated–which is pretty much all the time. I think dementia strips people bare so that you can see what always drove them. In my mother’s case, her house will never be clean enough, she will never be thin enough, no one respects her, everyone is conspiring against her. These pathologies were ever-present throughout my childhood, and they shaped some of the worst parts of me. Now, for my mother, they manifest in an obsessive need to clean, such that she squirrels away important objects–shoes, keys, cell phones, the dog’s water bowl–in a never-ending quest to tidy up, because no one will love you if you have a dirty house. She doesn’t eat, she’s tiny, and her clothes hang on her, yet she is still sensitive about being too fat, because no one will love you if you’re too fat. We have to handle her, meaning we constantly function on parallel levels of reality, pretending to involve her in decisions while making them for her. When she gets wind this is happening, she lashes out–no one respects her, she is a prisoner, she’s not allowed to drive (true, but for very good reason; YOU’RE WELCOME, fellow drivers!), she hasn’t been allowed to buy new clothes for two years (patently false), she’s not allowed to leave the apartment (difficult, but we make every effort to attach her to the world), she’s dizzy but isn’t allowed to see a doctor (she has seen many doctors and is undergoing vestibular therapy), she was forced to move here (it was her idea and over my objections). Her forgetfulness has made her the perfect victim, just as she always wanted to be, where every kindness done to or for her is completely forgotten in a rage against the prison of judgment and self-doubt she locked herself in long ago.

This brings me to the surgery. After fifteen straight hours of worrying, caring, asking questions of doctors, fetching ice, procuring lunch, going over meds, fitting in the occasional work email, navigating the logistics of caring for an old sick man, and providing my mother with clothing, bathroom, food, exercise, entertainment, and the luxury of detachment from any real responsibility for what was happening, it was time to take my dad home. The trip did not go well, with bouts of vomiting and dry heaving coming from him in the passenger seat, and yelling from my mom in the backseat for “leaving” my sister–who was not supposed to be with us, but cognitively, Mom just couldn’t grasp that distinction. Park the car, go get the wheelchair, get him in the wheelchair, move the car 40 feet so the city bus doesn’t hit it, take him upstairs, get him in bed, get the dog, return the wheelchair, move the car again, walk the dog, go back upstairs, figure out meds, get the two of them to bed. I had no patience left, so I didn’t tend carefully enough to the construction of her alternate reality, because I just needed to GET IT DONE. She lost it, in a torrent of invective muttered under her breath. Then, to me, she growled, “Why don’t you show me some respect for once in your goddamn life,” in the low, scary voice she would use when I was little and acting out in a store and she would dig her fingernails into my arm until they broke the skin. Basically, having forgotten everything I did right for the previous fourteen hours, or 43 years, she was calling me a bad daughter. There was no point in responding–she forgot it all minutes later, the outburst, the surgery, everything. And besides, I really just needed a trashcan, because it was 10 PM, the dog had to be walked, and I was still holding a bag of my dad’s puke.

The coloring–I stay inside the lines, I assemble soothing palettes, and I mix the colors to create depth and interest. I am good at it.

coloring