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.