dementia

Steak And Busking And Chocolate

Deb Zuroski, , , , , , , , , 2 Comments

The trombone player is sitting in a doorway, playing poorly. This is his norm, though he’s been absent from Walnut Street for weeks. Perhaps the cooler temps drew him back. It’s humid and starting to rain, which will undoubtedly make busking a less profitable activity today. Sometimes, he comes in to the coffee shop to use the bathroom. The owners put a code on the doors to make it harder to access them. Eff them. I’ve shared the code a million times and will continue to do so.

Until we have safe, clean, accessible public toilets, businesses should recognize that they’re going to receive visitors who need a bathroom. I don’t care about the reasons businesses shouldn’t “have to” allow non-paying customers to use the bathroom. I may not be a Christian but even I know Jesus reminded people that how we treat the least among us is how we’re treating him; I feel really confident that he was including bathroom breaks in that.

Last week, a busker sat on a bench outside Blick, an art store up the street from the coffee shop. They had a guitar and an oil pastel. I didn’t ask; the implication, of course, is that they made it. I was walking by but paused to talk for a moment. They told me that their art supplies had been stolen. Could I give them some money to replace their supplies?

A pause here–I’ve been talking to unhoused and vulnerable people for years. I’ve even told some stories here about the lovely and, sometimes, terrible people I’ve met. Don’t allow media and Hollywood tell you what to think. There is not a single person on earth who woke up one morning and said “Gosh, I think I’ll stand on the corner and ask for money today because I’ll definitely take home more than I would if I had an “official” job. It’ll be fun. Everyone will be nice.” 

Anyway, back to the busker. I introduced myself and asked what name they use, which I won’t share here to protect their privacy. (I actually had a brief internal debate about sharing their name on this blog but decided there was no justification.) Then, I gave them a choice–I could buy them supplies (I had an internal limit that I did not share) or give them the $20 bill I had in my hand. Art supplies cost a lot more than $20, as I told them. We talked for a bit longer and I decided to do both. 

The folks at Blick told me to make an online donation (a ko-fi, for example) to the busker instead, though they readily helped me pick out some oil pastels and pencils. Blick staff thought they’d receive a visit from the busker later trying to return the art supplies for cash and told me they wouldn’t accept them back without my presence. I promised to warn my new acquaintance, which I did, when I handed them the bag. Total cost: the $20 bill and $41 in art supplies. Would I do it again? Yes, though I think I’d handle it a little differently. The choice I initially offered was unfair. If you’re hungry, you’re going for the food in front of you, not the promise of a cooking lesson.

Last week, I drove to Jeffersontown, Kentucky for an author talk. Before leaving on my trip, I stopped at the coffee shop to get a BIG iced tea for the road. I told the baristas that I was going to see if Mitch McConnell is actually alive because someone has to. It made them laugh, the intent of my comment, obv, but shouldn’t we feel deep grief that we’re at the stage of our democracy that politicians hide and lie?

The author talk–Christina Lauren, Susan Lee, and Nikki Payne–was a delight. I laughed a lot and bought more books for the TBR. (I’m going to live forever if my TBR is anything to go by.)

I probably talk too much about my food issues–malabsorption, from losing part of my liver (like I set my liver down on a counter and forgot to pick it up), but if you couldn’t absorb nutrients and most food made you feel like butt, you might also talk about it too much. Lol Anyway, I wanted something to eat and chose a steakhouse because if I’m going to be sick anyway, I might as well enjoy part of the experience.

The steaks were all about the same price. The restaurant was quiet, nearly empty on a Monday night. I told my server to ask Chef to pick the steak and prepare it as it should be. I chose my side–based on the server’s description–broccoli the size of trees. The whole meal cost me less than lunch for two at Steak and Shake (which was $55 last week with my dementia friend). The server and the manager came over to chat with me; they’re friends. She gave him a job because he just graduated from college and is still looking for something in his field. Chef gave me a free dessert, strawberry shortcake with homemade vanilla ice cream, and I gave the server a big tip. I took the dessert back to my hotel room and ate it with my hands because they forgot to give me a spoon. It was delightful.

Yesterday, I was in Erie, visiting N-Aunt Ginny. She was less present even than the last time I was in town two weeks ago. Our usual selfie tells the story. Her eyes aren’t seeing what we see.  Visiting her breaks me into smaller and smaller pieces each time. I go there because she is as present as she can be and she deserves the best of my presence from me. And when I visit, I get to wipe her hands clean after lunch, like she did for me a long time ago. It is a gift, an honor, to be a trusted presence in someone’s life. Also, because I can always find something to laugh about, I have to tell you: She broke up with me at the end of our visit. I’m not sure which former boyfriend I represented but she let me down easy. And I told her, in turn, that I’d always love her, which is true.

Before going to the long term care facility to see N-Aunt Ginny, I stopped, as I usually do, at the candy store, Romolo. I was running late, due to some really bad traffic in Pittsburgh and several construction areas on the highway. It was 11:45AM. I didn’t want to miss lunch with her. So, I grabbed dark chocolate peppermint patties (N-Aunt Ginny’s favorites) and small gift boxes of chocolate for her three lunchmates. The line was unmoving. Usually, I just mind-wander while I’m waiting. Being in a hurry made me pay more attention, which I am delighted that I did.

The two young people–do you remember being that young? Perhaps you, dear reader, ARE that young–were making a purchase and didn’t have enough money. One of them ran outside to get more from their car. I stepped up to the counter, looked at the cashier, she nodded, and I tapped my card against the payment machine. The transaction went through–$20.75. The young many who was waiting at the counter realized too late what I was doing. 

He was horrified. “No, noooo,” he said. “You didn’t have to do that.” I looked at him and said, “I wanted to.” (And not because I was in a hurry. I wasn’t in THAT much of a hurry.) His friend came running up with the additional dollar that they needed (yes, they had a $20 on the counter) and gasped when the $20 was returned. They both hugged me and promised to do something nice for someone else and then, they left, treat box in hand. 

Here’s the thing: I will never be Mackenzie Scott or Beyonce or even a multi-millionaire. I don’t have a big, visible life. But I can make a difference for that person whose standing, embarrassed, at the register. It cost me $20.75, literally a lunch, to make two people smile like the sun just broke through the clouds. It isn’t even about the money. It’s about the community we form when we see the people around us, when we look up from our mind-wander or our scrolling or whatever and pay attention.

Much love.

Steak And Busking And Chocolate

Kitten Heels Are Not For Kittens

Deb Zuroski, , , , , , , , , , 2 Comments

That person I help–my dementia friend (DF): I misplaced her when we were out together. It was maybe a minute though it seemed like days. I compare it, not unfairly IMO, to losing one of my kids at the store when they were little and hiding behind a mannequin or under a clothes rack. Only she wasn’t doing either. She left the store. Just walked away. Believe me; I ALWAYS say, “Wait for me right here. Do not leave.” She always agrees. And then, boom. She’s gone. 

She has an airtag on her keys. It’s necessary because she sometimes forgets her phone but never her keys. Her gerontologist suggested it, brilliant really. We’ve been fussing about how we could make sure she kept her phone with her. She swears that she always has her phone. If I had a dollar for every time she doesn’t have it, I’d have enough money for a pittie dog farm, big and fenced and shady so I could rescue all the pitties and keep them safe.

DF is going out with another friend this afternoon. We, the friend and I, chatted by text early today to make sure she’s prepared for the work involved, particularly when DF gets anxious, which is often. 

It’s the last days of Pride. The bagel place is ending its month-long run of bagels with sprinkles. I did not get one because I’m one of only about 10 people in the world who does not like the taste of sprinkles. Yeah, I know that’s weird. No, I don’t know why I don’t like sprinkles. But I don’t. And like most things, you can talk me to death about it without convincing me that I just haven’t tried the right kind of sprinkles. 

Two pretty young women just walked by in kitten heels. And now, they know why no one wears kitten heels for very long. Their outfits are charming–short shorts and matching midriff tops but DAMN their feets are a-hurtin.

A group of women parked near me this morning and puzzled over the solar parking meter, how to use it and how awesome the old days were. I have to agree that the old days were kind of awesome when it comes to parking. If you were lucky, you’d pull into a parking spot that still had time on the meter. That was a little like a lottery win, which is funny because parking cost like 10 cents an hour. For a time, we had these little parking receipts (?) to put on our dashboards and, again, if you were lucky, someone would hand you their unexpired receipt to put on your dash. 

Once they paid for parking, the group of women–five in total–started walking down the street but worried that they wouldn’t be able to find their car again. One of them took a picture of the intersection, in case they couldn’t remember. If you ever visit this neighborhood, you’ll know why it’s basically impossible to lose your car. They were so sweetly excited to be here, in this tiny, one-street, shopping district.

My eldest and I are going to the Netherlands in about a month. I’ve been shopping for some place to stay and having a delightful time. I can remember getting hotel rooms in the pre-internet days and I’d never go back to that. Travel agents were basically a necessity if you were leaving the country. Now, I can find out with a few clicks that our prospective hotel has a mandatory no swimsuit rule in their pool. I was thinking a pool would be a good idea given the extreme temperatures Europe has been experiencing. I’ve decided, however, that my puritan roots will not allow me to get into the same pool–naked–as my adult, also naked, son. Lol We’ve found a great place and are super excited about our travel agenda. It has no pool but is about 30 minutes from the beach.

Don’t worry. I’m going to share obnoxiously. Did you know, for example, that NL has TWO different cheese markets during the summer?! I have no idea what I’m going to do with all the cheese I’m going to buy, particularly since I’m lactose intolerant, won’t have a kitchen, and can’t possibly bring it back to the US. (Can you imagine the smell of my luggage?!)

A young man in a maroon shirt just walked by with a pastry box that he threw in the garbage can before licking his fingers. I don’t know what he had but he really liked it. It’s Monday; the bakery across the street is closed. The coffee shop doesn’t provide pastry boxes. Maybe Paris Baguette, down the street? I worry sometimes about it, a chain, pushing out the local stores here but at least it’s locally owned. Does that make it better?

Those pretty girls in their short shorts and midriff tops just walked by again. They’ve changed into flipflops. They still look cute and their feet no longer hurt. I call that a win for unfashion.

Growing up, our house was miles from the nearest library. There was a bus stop about a mile away, though, with a corresponding stop at a shopping plaza where the library was located. I’d walk across a huge field by the nearby school, red brick, one story, with a playground in the back, worrying that the bus would arrive and leave before I was close enough to catch it. It never did, though I recall clearly seeing it arrive early at the stop one time. I ran all the way there, just in case the driver decided to leave.

There was no bench, just the wide-open field for sitting. One time, I waited near a former friend, J. We stopped being friends when she got into some trouble, along with her brothers. They sold; she used. I was afraid to get too close, as though drug addiction is contagious. She was friendly, tried to have a conversation with me; I didn’t know how to be normal around her. I can still picture her, sitting on the ground, criss-cross applesauce, in jean shorts and a red striped tee, long hair loose around her shoulders, big, dark glasses covering most of her face. She overdosed a few years later. Unrelated to J’s death, her brothers served some time for selling. The family moved away but I heard that J’s momma never recovered, her heart broken beyond repair by multiple losses.

The bus ride always seemed long to a pre-teen/teenager. I worried about missing my stop, which adult me realizes is ridiculous. The same man drove the route every single time I rode the bus. I’m sure he was watching out for me. I, on the other hand, was alone, feeling very adult, of course, and very centered in a universe that actually is far too large to even notice a young girl riding the bus. 

The library had a literal storefront because it was, in fact, located in a strip mall with boutique clothing stores and a Hornes department store. I’d go in, drop off all my borrows and spend the hour before the return bus picking out the next week’s reads–Trixie Belden, Cherry Ames, Nancy Drew, Flowers In the Attic, Gone With the Wind, Fahrenheit 451, Dandelion Wine, and every Harlequin romance written, I think. lol 

Sometimes the librarians (and my teachers) would ask if I was allowed to read the “more adult” books. Of course, I’d say yes but I’m pretty confident that my parents never checked on my reading preferences. This was the 1970s, the time when parents had to be reminded to check whether their children were even in the house. 

The only thing that changed after I learned to drive was that I’d also visit the library’s main branch, which was much larger. When there was a library book sale, oooohhhh my, I would go crazy. I still have books I purchased at those sales, their “withdrawn” stamps faded now, the spines worn, treasures, all of them. Weeding, it’s called, as Rachel Maddon discovered at the ALA conference recently.

The ambulance pulled up next door after midnight. The neighbors are in their 90s, vibrant and busy but nonetheless elderly. I watch over them unobtrusively, making sure their routines continue, that the garbage cans go out to the curb and return to the side of the house, that he goes grocery shopping (the same day every week, clockwork), that they put out their usual decorations for each holiday. When I saw the EMTs, I did not rush across the yard to their house, of course, but I did text the next day to check in. 

She fell down the stairs. My 90+ neighbor fell down the stairs. She broke a finger, her clavicle, her ankle, and bones in her back. The daughter gave me permission to visit. Just being honest here; this is one of the things that overflows the cauldron of grief. 

The coffee shop is busy today, the overhead door open to the warm, sometimes hot, breeze, the sky a muddled blue, like someone mostly mixed in a spot of gray and then added a bunch of fluffy white with gray to cloud the edges of the canvas. It wasn’t the “art guy” who sits near me with a big bag of pastels. He’d be more likely to draw the sky as a piece of modern art and we’d stand under it, our heads tilted, as we try to absorb his vision.

There was an estate sale just down the street, less than a block away. When I saw the picture of the house, I knew that it belonged to the elderly lady who used to walk her Great Pyrenees, Maestro, in the neighborhood every day. She would invite people to “Come, drink wine with me on my purple porch.” (The porch is, in fact, a deep, lovely purple.) She was tiny with fine, long, white hair and at one time, she was famous, traveling the world with her harp, performing with all the major symphonies. She also painted, embroidered, made tapestries. Her house, which is falling apart, is bright with high ceilings, furnished with beautiful Victorian settees and inlaid mahogany tables. I hope her son took Maestro to live with him in California. 

I went to an author talk recently, Penny Reid in conversation with her sister. I’m not sure what I expected. She often talks about how awkward she is but, in fact, she was delightful–funny, engaging, and charismatic. The event was in Chesapeake, Virginia, quite a drive for me, but I turned it into an adventure, ate at a great restaurant, soaked in a pool, chatted with some strangers, laughed.

Next was a talk in Bedford, New York, with Annabel Monaghan. This time, I ordered my dinner at the bar. The bartender gave me a free drink, which, since I’m sober, was a cranberry juice (with a lime!). He was a no-nonsense guy from Brooklyn, the accent gave him away, who did NOT like the guy who came to stand next to my bar seat. I didn’t like him either. That might be what got me the free drink. I ate in my room, having spent just a little too much time outside my comfort zone.  

I’m doing that difficult thing, finding the person I am after the person I was. 

Much love. 

Kitten Heels Are Not For Kittens

Valor and Vulnerability

Deb Zuroski, , , , , , , , , 1 Comment

The angry part of me wants to point out how much it has cost the US to attack another country– in lives, property, and whatever remained of our international standing. At least we got what we went in there for, right? Wait…what did we gain, again? I’m unclear about the purpose and result, even ignoring, just for the moment, that Iran is proposing to charge $2 million per ship to travel the Strait. (And what price does one put on dead school children?) 

On the other hand, on this blue-sky day, it is remarkably satisfying to acknowledge that there are few living people in the entire world who are more hated than our current president. If he had the capacity to understand, his narcissistic self would be devastated. No matter how awful a person might be to their partner, child, barista, server, contractor, employee, boss, they will likely never achieve the degree of hatred that Trump has. If he hadn’t become president, he’d just be a foolish, elderly man who people mostly didn’t know or care about. And the world would be significantly better off. 

There are four astronauts traveling through the vastness of space on their return trip to Earth. While we celebrate the success of their mission, I suspect that they are sad to return home. I read somewhere that having once gone into space, every astronaut would go back again. Although I’ve never had such a calling, and indeed have terrible motion sickness, I watch the videos of those joyful scientists and feel what must be merely a glimmer of the wonder they’re experiencing.

Imagine being so morally unhealthy that you can’t appreciate the vastness of our universe and our tiny place in it, that you can’t look at the work of our astronauts and all of NASA with the awe and excitement they deserve, that you haven’t the capacity to wonder at four people achieving what no one has ever done before. If he weren’t a terrible person who has done irreversible harm to humanity, I might feel a little sorry for him. But he is terrible and thus deserves only the amount of sympathy he is capable of feeling, which is none. 

As I look out the coffee shop window, watching people wander the sidewalks–some in matching jackets, some in clothes that scream “I didn’t check my weather app this morning,” I am making the choice to honor our astronauts and ignore the fool building a ballroom as Rome is burning.

Very shortly, I will visit DF (dementia friend), who will tell me about their day, ask about mine, and then retain nothing of the conversation. When you experience this, I must counsel you, it is a lot like working at Disney–no matter how many times you are asked the same question, you cannot ever get mad. The person asking doesn’t know the answer. That’s why they’re asking. 

For me, there’s a challenge in finding new ways to answer that still get the message across–it’s like the verbal version of a writing challenge: how many different ways can you say the same thing? I have found that, in fact, there are many and varied ways to tell DF that my day is busy, that the children are fine, that I’m hungry and don’t care where we eat, that I will explain whatever it is that DF can’t remember or understand or figure out. They never recall the answer but their brain, which can’t hold new information, needs the reassurance. 

Yesterday, it was supervising the task of writing a check for the new handrails on DF’s front steps. To protect everyone involved, I told the contractor that absolutely no financial transactions are to occur without me present. DF can’t remember the agreed-to price or how much upfront money we gave the contractor. I feel a little sick when I think about how vulnerable that makes them. I trust the contractor or else we wouldn’t be working with him. Nonetheless, I often get the kind of anxiety one might feel if they left a toddler next to a pan of boiling water. 

The peace of my coffee shop experience has been disrupted by a man. Isn’t that always the case?! Hehe Just joking. Well, not exactly. There’s a contractor repairing the sidewalk across the street. He is grinding down something and then using a leaf blower to clear out the dust, releasing clouds of white, gritty dirt into the air. The coffee shop window is closed but the dust has begun its insidious infiltration. 

“Chuck E’s In Love” is playing in my airpods right now. I love the twist ending, jealousy to joy. So great. 

You’re going to be shocked but there’s a very attractive older man currently proclaiming that 9/11 was an inside job. He “knows a little about implosions” and he’s pretty confident that the buildings were blown up just before the planes crashed into them. Sigh. Imma leave the coffee shop for the day. 

Much love.

Valor and Vulnerability

UPDATED: Anyone Here Order a Slice of Alzheimer’s?

Deb Zuroski, , , , , , , , , , , 5 Comments

Pamela’s Diner, on the weekends, can often be a place to avoid. One of the great things about it, though, is the joyful noise of people finally together who often cannot be. The restaurant was full today but I mostly travel in a pack of one which makes it pretty easy to get a table. Melissa, one of the servers, sat a group of six women next to me at my tiny table (it’s supposed to seat two but one side of the table is broken like an accidental drop-leaf table). Those women looked so young to me, a familiar proclamation of the middle aged (she says in an unsuccessful attempt to make herself feel younger), and delighted to be together. There were three children with them, a charmingly self-aware 6 year old, a toddler discovering that they appeal to their neighbors, and a baby who was all id, hungry and, once sated, sleepy. 

Sometimes, as I look around the diner, I catch the eye of another people-watcher. There are two types: 1) looks away immediately, 2) smiles and continues people-watching. When I was younger, I would have been in the first group, shy and perhaps flushing with embarrassment, but now, older and a devout member of the we-do-not-care club, I smile and sometimes, depending on who it is, I’ll even wink. Very daring, perhaps, but it makes me laugh. 

I know most of the employees at Pamela’s. Sometimes, when I walk in, several of them will call out, “Hi, Deb,” which makes me feel like I live in that old television series, Cheers. Hehe I like to think that strangers whisper about the famous person and try to figure out who I am. That makes me laugh, too. If only you knew, my friends. If only you knew….

There’s a barista at the coffee shop who has the greatest hair color – it’s really a blend of several colors, a little purple, a little red, a little blue. Every time I see them, I say something about their hair and we talk about how complex it is to keep a color fresh. They always say, “Oh, I was thinking how bad it looks.” And I always say, “You can’t see what I can see.” This is not a statement about hair color. 

Also, as just an aside, why in the ever-loving, noisy-ass, shrieking, are we listening to Squid as background music? Even with my headphones in and my music UP, I cannot escape the screaming. It isn’t in my head, I swear. It’s coming from the speakers and I’m really getting an understanding of the psychological warfare we once engaged in against North Korea. 

Things in the US are about to get worse, when the House and Senate finish reconciling their “big, beautiful bill.” Whatever your party, your community will be devastated by the Medicaid and Medicare cuts that are planned. It is clear to me that the average person is so busy demonizing Medicaid “waste” – just as our “leaders” intended – that they do not realize how many people rely on it and just who, exactly, those people are. I’ll bet, if you queried people at YOUR local diner, at least a third of them couldn’t even explain the purpose of either Medicaid or Medicare. 

Do YOU know which states in the US rely most on federal funding of Medicaid? Six of the seven states receiving the most federal Medicaid funding voted for our current president. The most vulnerable in those communities will lose their coverage and they’ll think it’s a mistake that our president didn’t know about, not a strategy to fill the coffers of the ultra-rich. Hospitals in high risk communities will fail for lack of funding, not for lack of demand. 

Your first thought might be that at least all these former MAGA voters will definitely vote against Republicans next time but guess what? The bill includes a section that allows the president to cancel elections at any time, for any reason. When this bill passes and gets signed, there may not be an opportunity to vote him or our current representatives and senators out of office. Since he wants to be president-for-life (aka king), you should, in fact, assume that he will cancel future votes. Because he will. Of course he will.  Fact-checked into oblivion. Thanks, Crescent, for the keen eye.

I don’t know the answer to the dilemma we’re in. But I do know that generating fear and hopelessness are two effective strategies of the fascists currently in power. We the People cannot submit. 

Next soapbox:  This might seem to be about Mamdani. And it is, sort of. It is possible to care about multiple things at the same time. For example, people can abhor the human rights catastrophes in the United States, Ukraine and Gaza AND, at the same time, not be antisemitic. This is not a skill unique to me. You can all do it, too. Just because I don’t want Palestinians murdered does not mean I want the Jewish state destroyed. It’s weird how successful the oligarchs have been at framing this issue in a way that makes people afraid to speak up. I’m not antisemitic. I am, however, anti-murder. There are always solutions that do not require the extermination of any ethnic community. If you think the only answer is killing, you’re probably reading the wrong blog. 

Even though I don’t talk about it much, I spend a not inconsiderable amount of time supporting someone who is declining cognitively. It’s a world of contradictions – a verbal obsession with cleanliness and dirty dishes in the cupboard; paying bills incorrectly while also refusing support to make the process easier. And fear. So much fear and yet the keys are often left in the deadbolt. I struggle sometimes to figure out how to provide the necessary support. I have no trouble living in their timeline, whatever it is, but then they do something dangerous like leave the house without their phone. Sometimes, they know exactly where they are and sometimes they get lost going to the restaurant they’ve been to a million times. This makes phonelessness terrifying to those of us who are trying to provide support. 

Googling “is it ethical to sew wearable trackers into someone’s clothes?” provides all kinds of terrifying results. I know exactly what you’re going to say: tell this person that you’re putting wearable trackers in their clothes. My friends, I can text this person 16 times that I’m picking them up at 9AM for their doctor appointment tomorrow and I’ll still either get a dozen frantic calls before I arrive (at 9AM or earlier) OR they’ll have forgotten that they have an appointment, even though it’s written in their handwriting in their calendar which is RIGHT THIS MINUTE open on their dining room table. 

It’s easy, so easy, to tell someone in cognitive decline to ALWAYS TAKE YOUR PHONE but sometimes this person is living in the 1970s, when phones weren’t mobile. Sometimes, even though their phone is in their hand, this person runs out to the car as I’m about to pull away – instead of calling me – because they pressed the wrong button on the TV remote and screwed up the TV. (Don’t try to solve this rabbit-hole problem: there are already notes with arrows on the remote control.) I even have spare copies of their house keys because they have lost their keys in their own pocket. That’s not a joke, like ‘I’d lose my head if it weren’t attached’.

As an example, here’s a brief story of the terrifying world of cognitive decline: my friend, we’ll call them Sally because it’s as removed from their name as anything could be – you know I’m all about privacy! – lends their car to someone. That someone takes just the car keys and hands the house keys to Sally. When I arrive to pick Sally up later, they are in an actual panic because they cannot find the house keys in order to lock up. I remind them that the keys are loose because Sally lent the car. “Are they in your pocket?” I ask. Sally’s answer: “Now, I remember.” The keys were, indeed, in Sally’s pocket. 

My friends, they could put their hand in their pocket a dozen times and not realize those keys are the item they’re looking for. It’s not their fault. Half the time, when we’re in the house looking for something, they forget what we’re doing while we’re still looking. Sometimes, they’ll remember that we’re searching but forget that we’re looking for the bill that was due yesterday. One time, we were trying to figure out whether they’d remembered to register the car (which we have to do annually in our state). I was looking through their files, which are organized by the month in which bills are paid (don’t even ask, it’s a complete filing nightmare that we’ll fix LATER). They were wandering around the living room, picking up random pieces of paper and showing them to me. “Is this what we’re looking for?” None of the pieces of paper were what we were looking for. They had, in fact, forgotten to renew their car registration, which I was able to determine by checking the state website. We took care of that immediately but it might be time again. I’d better make a note to check with them. Anyway…IT’S NOT THEIR FAULT.

The first statement in the Bill of Rights of the Cognitively Declining should be “It’s not their fault.” It’s never their fault. Trust me: none of the cognitively declining people I’ve met intentionally lost their keys, forgot my name, burned their dinner. Their world doesn’t look like ours. And they are so AFRAID. 

I know that I’ve told the story before about pretending to make deli sandwiches with not-my-Aunt Ginny who worked at a delicatessen in the 1940s. Just a couple years ago, we made pretend turkey sandwiches, filled pretend jars with pickles, sorted pretend utensils. It might seem funny. Sometimes, you have to laugh or else you’ll cry. But the point is, she was worried, so worried, the entire time that we wouldn’t be ready for the lunch rush. Her fear was real, even though the pickles weren’t. 

Thirty-ish years ago, I met a woman living on the Alzheimer’s ward of a long-term care facility. Alzheimer’s wards, in case you’ve never visited one, are locked to prevent the patients from wandering off. If they walk or wheel themselves too close to the doors, an alarm goes off to give the care team a heads up that there’s someone potentially trying to make a break for it. 

I know I’ve mentioned this before so forgive me if you remember my story: I was at the facility with a team doing signage and space planning. We had to measure everything and I do mean everything: square footage of rooms, height of lights and doorknobs, depth of equipment. You name it, we documented it. This was in the days before technological support. We had measuring tapes and sketched room outlines to fill in with measurements. It was tedious and took days to complete. Yes, I’m a writer which makes this assignment a little unusual but it was a big job. All hands on deck, so to speak. 

We’re walking through the ward when a woman rolls up to me in her wheelchair. Just as you have probably seen depicted on television, patients use their feet to push themselves around the wards when they’re too unstable to be allowed to walk alone or with an assistive device. She’s holding a baby doll and tries to hand it to me. I attempt to refuse. Fred, who is working with me, is teasing me about becoming a new mom. I’m a little embarrassed because I’m young, so young, and at work, trying to be a useful member of the team. Also, the doll is clearly a treasured possession and I don’t want to be in charge of that. She insists, which might seem a strange thing for a wheelchair-bound, non-verbal Alzheimer’s patient to do successfully, but she did it. I have no other explanation than to say that she persisted more effectively than I resisted. I carried her baby for the rest of the day. She smiled every time she saw me as she rolled from long hallway to long hallway. And at the end of the day, I gave her baby doll to the staff at the central desk to return. 

So, what’s the point? Obviously, meeting someone with declining cognition sure does present opportunities to learn but also: it’s not their fault. Cognitive decline isn’t a failure of imagination or a personality flaw or a crime. Your patience and imagination and personal integrity are essential to work effectively with them but they can be frightened and angry and mean and confused and grateful and loving and FEARFUL. 

Sometimes, my not-my-Aunt Ginny is combative, particularly in the late afternoon because she has sundowners, which means that she gets more confused and frightened as the day closes. I don’t visit after noon anymore. It’s too hard on her. She used to cry when I left and verbally abuse me for refusing to take her with me, which upset us both, her because it was, in her mind, a betrayal of our relationship, me because it was awful to see her so afraid. “I thought I knew you better,” she’d say, deeply wounded because I wouldn’t take her home to a house that was sold over a year ago to pay for her long-term care. 

All this brings us back to the person close to me who has cognitive decline. Have you ever seen that old Will Ferrrell comedy skit, ‘The Landlord’? (“God, you’re mean.”) People with cognitive decline can be so damn mean. Even though IT IS NOT THEIR FAULT, it can still be very hurtful. Called out, they 1) didn’t say that, 2) didn’t mean that, 3) can’t remember what they said, 4) are already having a different conversation, 5) and so on. There isn’t a good answer. They simply no longer have the awareness or understanding to be accountable for their unkindnesses. Unfair, isn’t it? Because who doesn’t want to call out the instrument of their pain?! But there’s no point. It’s like shaking a child who’s crying. The child isn’t the asshole. 

Hurt feelings aren’t the worst part, though. When my mother-in-law began to decline cognitively, I was reminded of the most painful aspect of illness. “Grief has arrived…. Hello, old friend,” which I have borrowed from the poem, “We grieve but we do not drown,” by scar_poetry. We grieve those we take care of. They are becoming something different, something that doesn’t meet our notion, our understanding of who they are. We MISS the person they were and sometimes we don’t really like the person they’ve become. My mother-in-law frequently forgot my name, sometimes didn’t recognize me at all. She’d refuse to do the things I’d ask of her, like take a shower, change her clothes, eat the food I cooked. 

When we first got to know each other, many years ago, we had to work hard to find common ground. She didn’t like that I’m Irish. I didn’t appreciate that she saved every single, tiny sliver of soap, a holdover from her childhood during the depression. It drove her crazy that I didn’t eat much. It drove me crazy that she didn’t respect my food boundaries. But we figured it out. We discovered all the great things about each other. It took time and patience but it was worth the effort. We formed a friendship that lasted nearly 15 years.

Everything changed when she started declining. She sometimes hated me, not Deb, but me, whoever I was to her in the moment. Of course, she never meant anything she said and didn’t even remember it afterwards. I knew this then and I understand it now. Knowing that, though, doesn’t lessen the grief, the bereavement of missing a person who is still with you but also not. We are forced to care for them in their existing form while mourning the person that they are no longer. It’s a cruel torture. And it’s still NOT THEIR FAULT.  

Having closed the 35 open browser windows on a certain someone’s phone in order to figure out why there was an ad playing (at the loudest possible volume), I find myself thinking about this today and hoping for peace tomorrow. I know I won’t get it in my personal life or in Gaza or in Ukraine but I can and will persist. Hopefully, I’ll be a little more Elizabeth Warren tomorrow and a little less young me in that Alzheimer’s ward. 

Much love. 

Hey, also, if you have an interest in supporting comics by Black women creators, there’s this cool Midnight Mystics kickstarter. I’m not in any way affiliated, though I did back the project. Maybe you’ll want to as well. Check it out. 

UPDATED: Anyone Here Order a Slice of Alzheimer’s?

Welcome to May

Deb Zuroski, , , , , , , Leave a comment

Maestro, the Great Pyrenees, just passed the coffee store with his owner, a very elderly woman who has dementia. She walks him nearly every day, sometimes multiple times a day, up and down Walnut Street. He’s a welcome sight for most of the pedestrians, a gentle giant of a dog with heavy white fur and a sweet face. His owner is equally sweet and fiercely protected by her son and her caregivers. I worried for a bit when she invited me and my daughter to drink wine on her porch. We don’t even know her name and thought that she could easily be taken advantage of. Our concern was needless. Her son takes good care of her in a way that allows her to continue her walks safely.

Things are gradually returning to normal after the catastrophic storm of Tuesday evening. I believe about 150,000 people are still out of power, down from the 250,000+ of Wednesday morning. The east end of Pittsburgh, where we live, was particularly badly hit, trees and lines down on nearly every block. Don’t worry, though. The wealthiest area was mostly unaffected. Their power lines are underground. 

Wednesday was a strange day in the community. I walked to Walnut Street, expecting that the area had power. Strangely, although some of the shops did, my preferred coffee shop did not. I went to Starbucks, a place I generally avoid because of their anti-worker policies. Apparently, when the going gets tough, I compromise my principles for iced tea and a place to work. 

The Starbucks was packed, forcing people, who definitely would prefer otherwise, to share tables. I asked a young woman if I could sit opposite her and she REALLY did not want to let me. Very reluctantly, she said, “Okay.” However, she did not move at all to accommodate my presence, which meant I had about 6 inches for my computer. That was not going to work so I waited for another seat to open up and took it quickly. My old seat was immediately snagged by a young man who did not tolerate her space-hogging. She left. I guess she wasn’t feeling the vibe. I can respect that. It’s like being a regular gym user who has to put up with all the new-years-resolution visitors on January 2nd. 

Last week, I bought a brand-new Ryobi lawn mower at auction for about $60, on behalf of another person, who shall remain a mystery. The mower arrived yesterday, still in the box, as expected. Unfortunately, once transported to its final location and opened, we discovered that it was missing a battery and charger. Auction items can’t be returned. They’re purchased as-is, where-is, which, in this case, turned out to be an annoying lesson learned. I immediately bought a battery and charger. Problem solved. Some of us easily moved on from the ‘trauma’. Surprisingly, it is I who have yet to move on. I feel so annoyed by the response of the recipient that I am questioning my urge to help, you know? I probably definitely need to chill. I would like to be a person who works for the benefit of the recipient, not for the possibility of praise. Good deeds are good regardless of recognition and perhaps more good with no recognition at all, particularly important to remember for those of us who don’t believe our good deeds are a path to heaven. 

Although I haven’t mentioned not-my-Aunt Ginny recently, I have been to see her. She’s well, if more crotchety. When I arrived last time, she was missing from the lunch table so I went to her room to persuade her to go to lunch and, when my persuasion skills failed to achieve their intended purpose, pushed her wheelchair to the lunch room anyway. 

She should have agency but often, as people slide into more severe dementia, it’s difficult to ensure that they are consulted and that their wishes are respected, primarily because their wishes are not necessarily beneficial to them. Not-my-Aunt Ginny prefers isolation, which is the worst possible thing for her. So, I took her to the lunch room. She had a great time. We lingered over her meal while I dodged her attempts to feed me and chatted with the other women at the table. They, by the way, are delightful: Older women whose minds are still intact as their bodies fail. They tease Ginny gently and talk to me about the lives they used to lead. It’s both significant and bittersweet. If I could be closer without moving there, I’d visit every week.

Much love.

Welcome to May

Pink Tea and Aunt G

Deb Zuroski, , , 3 Comments

Hey. Hi. Hello. How have you been? Busy? Me too. Me too. My daughter and her roommate are currently living with me. I might have mentioned that they had a month to month lease and their landlord decided to boot them at the end of June. He may have been trying to force them into signing another lease but this here mom stepped in to offer them temporary housing since they’re both leaving the city at the end of summer. 

The house is, as a result, something of a mess. It’s actually catastrophically untidy because their home is inside my home. But my youngest son and I are enjoying the company (and the cooking). Even in my bedroom, I can hear my girls, as I’ve been thinking of them, laughing and chattering with their friends on facetime. We’re going to miss them when they leave. The dogs are going to go into a decline because they have never been so loved as they are right now, with so many available hands to pet them. 

Since all of the bedrooms are occupied, my three dogs are with people instead of kenneled in the guest room. Yes, there’s a mini-doxy sleeping with me. We both object to this, quite strongly. I have a king mattress so, because she is NOT a cuddler, she is sleeping on the cat’s side. Which the cat does not appreciate. The cat is protesting by sleeping at the foot of the bed. I’ve accidentally kicked her off twice when I stretch out in my sleep. In other words, things are going great. Right? On the other hand, the cat is absolutely thrilled by my daughter’s return to the house so I’ll likely eventually be forgiven for allowing the dog on the bed. 

To recap: Chaos is generally the order of the day but the house is also currently overflowing with joy. I’d exchange a calm, tidy house for a joyful one every single time without a moment’s hesitation. 

Working at the coffee shop – a frequent, but usually not constant, event – is now a daily necessity. My desk, a rescued antique roll-top, is not even reachable due to the current state of things. But writing in this big, open building is an absolute hoot. I like the energy level. The constant hum of conversation. The people-watching options. The outfit inspiration. 

A young person just walked by wearing a (very) colorful Hawaiian shirt with matching shorts. I’ve never seen an entire Hawaiian-shirt-themed outfit. It is fantastic and I mean that entirely unironically. I would love to wear that outfit. Many years ago, I attended a mandatory team-building overnight for work and the admin assistant tried to get us all to wear grass skirts and leis. (Her success was limited.) Perhaps things would have turned out differently if we’d all gotten to wear Hawaiian shirts and shorts? 

The main street in front of the coffee shop has been closed a lot recently – Jam on Walnut, Shadyside Sundays, Vintage Grand Prix, ShadySidewalk Sale. There were barricades set up to prevent driving and the lack of cars had the very unexpected effect of reducing the community stress. The space is obviously quieter without traffic. Pedestrians meandered. The coffee shop line was consistently out the door. And the weather cooperated, if you don’t mind heat that will cook your brains as you walk from sun to shade to sun. 

When I last drove to Erie, the weather up there was a little gloomy and cool. Not-my-Aunt G was having a less than stellar day. In a mental place that had no memories and no structure, she was sad and a little grumpy, as you’d expect of a person who isn’t entirely sure where they are. Because the weather in Pittsburgh was fantastic, I was wearing a linen dress – very casual, loose, summery – that she objected to strongly. Because, as usual, she thought I was a guy. She was worried for my safety since, as she told me, men wearing women’s clothing aren’t safe. 

Sometimes, people ask me why I visit since she doesn’t remember who I am. Here’s the thing, really two things – I don’t just visit for her. She’s been family to me for the literal entirety of my life. Just because she doesn’t remember me doesn’t mean I’ve forgotten her. Sure, it’s not always easy talking since we no longer have shared memories but I can FIND things to say. I ask her about a specific memory or talk to her about things that I know she used to value. She loves flowers so I’ve been keeping her updated on my pollinator garden. (She thinks I should plant more pink roses – her personal favorites. She tells me that every time I tell her about my garden.) Last week, I asked her what she wanted me to make for her dinner. We talked for an hour about what I should buy at the grocery store. We made a list. She found it very soothing because, she said, she never has any food in the refrigerator anymore. 

Also, even though she doesn’t remember me, she is always happy to see me. I usually arrive before lunch so I can escort her (aka push her wheelchair) to the dining room. We sit with three other women and talk. I often comment on the music – they have a rotating playlist of songs from each decade. The music is a great topic. All the residents have thoughts – and so do the staff. Luke, one of the staff, came over to talk about the music. He swore that Frank Sinatra would be playing soon and sure enough, when one of his songs finally came on, there was a resounding cry of “ole blue eyes.” 

Not-my-Aunt G introduced Luke as her boyfriend. I joked with him about that – scolded him for cheating on me – and he told me not to tell Elaine who eats in the other dining room because she also thinks he’s her boyfriend. Poor guy. 

Usually I bring my latest crochet project so I have something to do with my hands. Last week, in addition to the usual box of cookies from the bakery, I brought homemade strawberry pie that not-my-Aunt G had requested. She didn’t want it, though, wasn’t in the mood. And that’s okay. My mom’s recipe for strawberry pie – made with strawberry compote – is straight from angels. Believe me; it did not go to waste.

Have you seen the Barbie movie? If you haven’t, get your butt there! If you have, what did you think? I mean, beyond loving it with all the breath in your body, what did you think? My daughter and her roomie didn’t even notice a couple references that decimated me in the most accurate metaphorical sense. I can’t wait to see it again.

There is something wrong with the novel I finished writing last month. I can’t figure out what it is so I’ve put it aside. I’m going to have to read it again in a couple months, at which point I will hopefully have an epiphany about why it isn’t working. While that novel percolates, I’m writing my next story, a contemporary rom-com. My male protagonist is bisexual which means that I need to find a bisexual beta reader. Unfortunately, none of the bisexual men in my community are willing to read a romance – not even for ME. I know. I know. That’s crazy. But there it is. 

Like the letters I write to friends, this blog post has gotten too long. I’m going to cut it off mid-update. Picture me, sitting at the entrance to the coffee shop, sun shining on my sweating glass of pink hibiscus tea. My computer screen is shaded as I type and watch and type some more.

Stay safe in this increasingly foolish world.

Much love.

Pink Tea and Aunt G

Forgotten

Deb Zuroski, , , , , Leave a comment
Deb and not-her-Aunt G

On Wednesday, I spent the evening with my not-my-Aunt G in the skilled nursing facility. It’s her permanent address now. The cognitive decline she masked so well in her home of 40+ years is painfully visible. Sometimes she knows that she’s confused. She has the cruel moments of clarity that remind me what I am losing but more often she is almost a stranger or perhaps, I am to her. 

She was sitting on her bed, her preferred seat, and I was teasing her by sitting in her wheelchair, using my feet to steer myself around the room. She was laughing and called me her ridiculous boyfriend. Not-my-Aunt G rarely recognizes me these days but the boyfriend label was a bit of a surprise, I have to say. I asked her if she knew who I was. 

She looked at me with those dark, deep-set, green eyes and said again, “You’re my boyfriend.” There’s a lot to unpack with that statement, right? How do I even respond? Do I, as current thinking suggests, just meet her where she is and play along? On Wednesday, that was hard to do. Usually, it isn’t a problem because I maintain my identity. It’s just our location that changes – we’re on Parade Street, we’re working at a deli, we’re in her house.  

This time it was different. She was lost somewhere in the past. I told her my name. She didn’t recognize it. I mentioned some other people she knows but they too were not familiar. She was afraid, telling me that we were in a “bad neighborhood.” She knew she was safe with me but she kept asking me not to leave her, to please take her home, as though I were about to abandon her in a place where she wasn’t safe. She was trying not to cry, standing at the entrance to her room, waving at me. I had to go. The doors to the wings of the SNF were already closed for the night. Her night nurse promised to check in on her regularly. Would that even help?

Her experiences melded with mine as I drove home – a long dark drive on a mostly empty highway – to a cacophony of voices and sounds in my head. How many times have I left someone in a place they didn’t want to be? How many more will I experience? And what will happen when it’s my turn? Do people avoid visiting nursing homes because they fear the elderly or because they fear their own mortality, their own lonely futures?

Next time I see her, not-my-Aunt G will not remember the details of this latest visit. That’s probably a kindness. It would be better, of course, if her strongest memories were more joyful, if those memories influenced her current experiences. That doesn’t seem to be how it works. Instead, she talks about her mom as though we’re both teenagers and her mom is struggling to stretch their income to feed everyone. 

It’s hard to shake these thoughts. It’s the worst time of year: cold, darker. There’s pressure to feel or pretend a joy that is probably antithetical for many of us. After every visit, I listen to my noisy thoughts as I drive – the sounds of the elderly crying out for a help that no one can provide, the fear in my not-my-aunt’s voice, the dismissal of caring but criminally overworked caregivers. The sounds of my husband, my mother-in-law, my mom, my grandmothers blend like car noises on a busy street. 

What’s the answer? If only I knew. I visit not-my-Aunt G selfishly because it gives me comfort to see her, even though she is nearly lost to me. It is a melancholy choice. It’s so easy to remember people the way they were. Actually participating in their current lives definitely offers unexpected gifts but spending any time among the forgotten elderly will change you in ways you can’t choose and probably wouldn’t. 

On my next visit, I’ll take a half dozen Christmas cookies and since I make a huge selection of cookies throughout December, I suspect that I’ll get to continue giving her new varieties all month. I’ll wear my holiday socks and tell her stories that I’ve already told her. Perhaps I’ll play a different role next visit. I don’t much like being her boyfriend but maybe we can work together at that deli, making turkey sandwiches.

Wishing you good health and good friends this holiday season.

Much love.

Forgotten