The Sick Moms Club
Only one criteria for membership!
Downhill / St. Petersburg, Florida // February 2025
I never wanted a child.
So the universe gave me an 84 year-old one.
We are the playthings of the gods.
I have cleaned up her urine. I have cleaned up her shit. I have changed her soiled diaper. I have used a q-tip to put medicine in tender places that I never wished to see, because there was no one else to do it.
What’s that they call it in the Bible? Smiting? God smote him? Smited him? Smit him? In my bitterer moments, it does feel as though I’ve been smote. In my better moments, it’s simply the part of my story where Timon & Pumbaa sing the “CIRRRRCLE of LIIIIIIFE.”
She’s obsessed with time but no longer understands it. It’s “Are we there yet?” times 84.
She asks a lot of 5 year old questions now. Who’s that? What’s that? Can we go now?
Every day is a good day for pancakes / St. Petersburg, FL // February 2025
She eats pancakes for breakfast, waffles for lunch, and a pregnant-lady sandwich of sweet potato and jelly on a hamburger bun for dinner. There are tons of things she can’t eat (dairy, beans, legumes, raw veggies, soy, & more!) and tons of things she won’t eat (meat, most particularly, which is a real problem when combined with the things she can’t eat and the fact that humans require protein in order to not shrivel like popsicle sticks on the vine). Fruit isn’t sweet enough so she sugars all over it. Every single surface in her apartment is sticky with maple syrup. But you can’t tell her nothin’.
She doesn’t even know she has dementia, so telling her that she can’t have sugar when this illness has robbed her of the vast majority of her taste buds and the only thing that still tastes good, or still tastes like anything, is something very, very sweet, and she gets precious little pleasure out of life these days and refuses to eat just about everything else so whaddya gonna do, force feed her pureed veggies and kimchi? Sneak meat into her morning pancakes? I am not. No.
I never wanted to run another persons life. I barely even wanted to run my own. I only became an adult by necessity, and because when I graduated college, Rosemary Quinn, who was the head of my Experimental Theatre Wing program at NYU, said (when I came crying into her office at the tail end of my third and final year of school), with a conspiratorial wink, “Nobody tells you this but being an adult is actually really fun.”
An adult, having fun. L-R: Msr. Norbert LeBinx (my Valentine’s gift from Samia), Ash, my gender neutral voodoo doll (from New Orleans), and someone you may already be acquainted with, Mr. Humphrey Octogart, my emotional support octopus … from the land of IKEA
A few months ago I had this realization, which I — arguably unnecessarily — shared with my mother. It is a realization built for family therapy, and sadly, I think we are past the point of any kind of growth these days. But as it is hard for me to keep revelations to myself....
My mom is obsessed with beauty — as am I. The first thing she says when she meets anyone new is a comment on whether she finds them beautiful, handsome, pretty, cute, or ugly. (If she deems them ugly, this tends to take the form of ‘it’s such a pity, but he’s ugly.’) My brain does some kind of aesthetic sorting hat process too. I resent it. I resent her for it.
For years, whenever I went to visit her, if I was wearing lipstick, she’d say, “You look so pretty!” and if I wasn’t wearing lipstick she’d say, “You look so tired!” (Maybe she’s right. I am very, very tired.)
Pretty! Tired! Pretty tired! (Accurate.) / St. Petersburg, FL // February 2025
Every time we encounter another living being at her Assisted Living, in the hallway or the dining room, staff member or resident, she’ll say, “This is my daughter. Isn’t she beautiful?” She does this at church, too. And then she will immediately move on, without saying hello, without asking after the other person’s anything, move right along, whether or not the person acknowledges my alleged beauty, or even responds at all. It always made me feel slightly squirrelly. Always the tinge of cringe.
I know why she does this. She considers me her greatest creation. I think making me might be the accomplishment she is most proud of in her life. I can’t know for sure but, if I were her, I think I’d be proud of being such a fucking survivor.
Her older brother died at 2 years old, but she survived, even though her own little fetus was fermented in grief.
Her father never hugged her, so she found other ways to get male touch.
She moved from the little coastal town of Santos, São Paulo to the big city of Salvador, Bahia when she was a young woman, lived with roommates and had adventures.
She met my father at a child psychology conference in Brazil, moved to New York without knowing English, and a decade later earned her Master’s degree in Drama Therapy at NYU (where I later studied Drama, without the therapy).
She has no depth perception and was afraid to drive a car but learned because I needed rides to activities.
She was ostracized in our suburban Long Island neighborhood for being a foreigner. She still threw parties and gave gifts and hosted playdates for me and my friends.
She survived colon cancer and three operations, when I was 7, 8, and 9.
My father largely ignored her and she divorced him. She moved us to Florida, where she knew a single person, and created an entire life for us down here.
She lived as a single mother in a strange Republican land and made sure I had everything I needed and some of the things I wanted.
She attended every performance and every graduation, right up until I left for college.
The summer between my first and second years at NYU, she found her boyfriend dead in his swimming pool, joined a bereavement group, and never dated again.
The realization I had, which I seemed to feel the burning need to tell her, was this: When the only thing she says to people about me is, “Isn’t she beautiful?” it makes me feel a bit objectified. That was the squirrelly thing. Like my looks are the only thing she’s proud of. But at this point, honestly, with her calling me mom, and starting to really lose it, I’ll gladly be her American Girl doll, her show piece, her lookwhatImadeisn’tshebeautiful daughter forever. I’ll wear dresses and bows and lipstick every time I see her, Santa, tooth fairy, genie, please, if only she would always know me as me.
“They say” there are good days and bad days with dementia. This was a good moment on a bad day, after pancakes and orange juice, just before she shooed us away. / St. Petersburg, FL // February 2025
For a few weeks now, my mother had largely lost her English. She was unable to switch back from Portuguese, which, ever since I have known her, she has always been able to do with ease. Even switching to Spanish used to be effortless for her, and truly, Spanish is close enough to Portuguese to be problematic. Whenever I attempt Spanish, I warn people that I will probably be speaking Portaňol!
Last week, her favorite aide, Marge, would ask her to speak English, and Mom would keep speaking in Portuguese, Portuguese, Portuguese. Then when Marge asked again, gently, as is her young, sweet, Filipina way, the last thing mom would say to her before shooing her out of her room was “I am speaking English” … IN ENGLISH.
My mother has become, in the past few weeks, rather like a pianissimo subway preacher, or a Brazilian Kreacher the house elf, muttering everything she thinks and narrating most of what she sees under her breath in Portuguese. She doesn’t know she’s narrating. She doesn’t know she’s repeating everything on a loop-de-loop. But she is. She most certainly is!
I present to you: A Brazilian Portuguese lesson from the mutterings of my mother’s addled brain. Repeat after me.
Fica comigo. Não me deixa. Stay here. Don’t leave me. (Gripping my hand surprisingly tight for a 93 pound woman with chicken bone arms.)
Comi muito. Más não comi carne. I ate a lot. But I didn’t eat meat. (She says this a lot. She has become very anti-meat.)
Quero suco de laranja. I want orange juice.
Não ‘tou sonhando más … I’m not dreaming, but….
A noite vou beber mais suco de laranja. At night I’m going to drink more orange juice. (She’s really on this orange juice kick!)
Vamos para sua casa. Let’s go to your house.
‘Ta quente quente. It’s hot hot.
Eu vou comendo. I go eating. (Doesn’t translate super well. The sentiment of this one was more like, ‘I’m gonna eat a little bit as I go along.’)
Não ‘tou sonhando más … Comi muito. Más não comi carne, não. Eu não comi carne. I’m not dreaming but. I ate a lot. But not meat, no. I didn’t eat meat.
A noite, talvez vou comer mais. At night, maybe I’ll eat more.
A week ago, after church, which she usually loves — if not actually hears or understands — she was grumpy and recalcitrant and confused. That morning, she called me mom for the first time. And the 8th.
We went to a rock painting party at my friend Adam’s house, where I knew she could take a nap on the couch. She napped on said couch for 4 hours, refusing pillows and blankets, lying on her right side with her head on the armrest, looking like a neck crick.
When we woke her up and tried to take her to her apartment, she begged and wheedled and bargained and pleaded:
Me deixa ficar aqui. Let me stay here.
Me deixa dormir aqui. Let me sleep here.
Vou ficar queta. I’ll be quiet.
‘Tou cansada cansada. I’m tired tired.
Comi muito no almoço, más não comi carne não. I ate a lot at lunch, but I didn’t eat meat no.
Tenho medo. I’m scared.
Me deixa aqui. Let me stay here.
Tenho medo. I’m scared.
Não ‘tou sonhando, não. I’m not dreaming, no.
Não é domingo, não. It’s not Sunday, no.
Não quero ir para igreja. I don’t want to go to church. (We had already been.)
Não me leva para igreja. Don’t take me to church. (At her request.)
Tenho certeza que não é domingo. I’m sure it’s not Sunday.
Tenho medo, más vamos comer. I am scared, but we’re going to eat.
Then she shit her pants on the couch but insisted that she didn’t.
Mãe, fica comigo. Mom, stay with me. (I’m here.)
Mãe, tenho medo. Mom, I’m scared. (It’s ok.)
Now would be a good time to tell you that “I’m scared” in Portuguese literally translates to I have fear. Which ….. accurate. I asked her what she was scared of, approximately 20 times and the 20th time, she answered, in Portuguese.
Não sei, morrer. I don’t know — to die.
The rehab where she was supposed to improve her balance and muscle tone with 3 hours of intensive physical therapy per day, but instead they messed up her meds and strapped her into a wheelchair, couldn’t communicate with her in her language, and took her purse because it’s “policy,” which caused her great psychic distress, a facility where she refused PT and where, when I visited her, she said repeatedly that she wanted to leave and that she wasn’t imprisoned there / Largo, FL // January 2025
Riddle me this: How many people does it take to get a soiled 84 year old 93-pound woman off the couch?
In this case, the answer is: 3. Myself, Adam, & Kenneth. But I am accepting punchlines in the comments. Submit yours below.
I’ve been wondering what exactly this business is about dreaming. She talks about dreaming a lot. She says ‘I’m not dreaming’ most of the time, but occasionally she’ll say ‘I think I’m dreaming.’ Or ‘I must be dreaming.’ On the day she fell on her face in front of me, after she asked “Where’s the baby,” and the staff members and Rev Ben and I all looked at her, low-key horrified, she said, “I’m dreaming,” with a wave of her hand as if to say don’t think anything of it, I was just out of it for a split-second, but I’m back now.
Is this the grim reaper’s work? A liminal state of mind-end before the end-end?
Today is Sunday again and when I arrived to pick her up for church, Marge told me that mom was found napping at 2am on the (rather hard, not so couchlike) couch near the elevator. Which is pretty far down the hall from her apartment. When I asked mom what happened, she said that when she went into her bedroom, John, who lives across the hall and is “meio surdo” (half deaf) and “um pouco esquisito” (a bit weird), was in her bed and she tried many things but couldn’t get him to leave. That’s why she went down the hall. So I told Susie at the front desk.
John hasn’t been at the facility in weeks.
Maybe mom was dreaming.
Maybe she can’t tell anymore.
Maybe she’s so sleep deprived that night dreams are like day dreams are indistinguishable from real life (also a dream, row row row your boat?).
I have met John and while he is indeed somewhat deaf, he never seemed particularly weird to me. But weird is where I live, so. Shrug. You’d have to be pretty fucking outlandish, perhaps even sinisterly so, for me to deem you ‘weird.’
I would have believed the story about him wandering into her room — plenty of people in that facility have memory issues. Maybe he got confused about which room was his. Hers is directly across the hall, after all. I almost believed the tale except for the tiny little fact that these apartment doors slam and close on their own and only unlock with an electronic key, mom goes nowhere and does nothing, and so, a bumbling John getting past her on the couch and into her bedroom without her noticing seems, shall we say, a tid bit unlikely.
She fell again today so I got that call, again, and when we talked on the phone I gently suggested that John being in her room may have possibly been a dream? or a result of her recent insomnia? She protested vehemently.
She then told me that we need to discuss her moving out of the facility and into an apartment, because it costs a fortune.
She thinks she can live in an apartment.
My most used emoji lately is this one:
😭
…. which emojipedia tells me is the “Loudly Crying Face.”
Excuse me while I go have a Date with my Sadness, that sweet little gollum of mine, and tend to my own insomnia.
Valentine’s Day in St. Petersburg / February 16th, 2025
And just like my mom now, when she bids me goodbye, I shoo my hand at you and say “Pode ir!”
You can go!
Oh, just one more thing. Would you like to join my club?
P.S. I love you.
Thank you so much for your journal, written with love. I'm going through this journey with my wife, though she's just old and not with dementia or anything. It's one day at a time (she taught me that a few years ago).
Dear Lila, this journal is heart-wrenching and inspiring. I laughed and cried. I'm grateful that you're sharing this journey with such profound and articulate insights. And I'm sending all my love to you and your mom.