Friday, July 1, 2016

Living with Dementia

My mother at 92.

18 June 2015. This was a hearing
test. The poetry of going "to see
a hearing thing" is probably
My title refers to my mother's dementia, with which I live as a caretaker. Some of these stories are funny. I don't mean to be making fun of anyone. I mean no disrespect. And I'm sure some of you will interpret this essay as a violation of privacy. But it's important to talk about all the little absurdities that happen as someone disappears into the vacuum of an unraveling brain. Sometimes she is lucid; other times she isn't. Sometimes the aphasia steals her tongue even when she is otherwise lucid.

Witness dementia constantly shifts in meaning. One of the many motifs running through the films of Ingmar Bergman lies in the witness's gaze as someone dies. The witness watches for the slight chance that the moment of death or the eyes of the dying might somehow reveal something beyond death or else confirm the certainties of nihilists that there is nothing there. Dementia is not as dramatic as all that, but it is still a slow-motion unraveling of consciousness, and as such, might reveal some clues as to the nature of the mind and of existence itself, as mind and existence seem locked and dependent upon each other in an eternal dialectic not unlike those two fish of yin and y├íng. But maybe I'm over-intellectualizing what is otherwise too uncomfortable to think about.

My father slid into dementia sixteen years ago with a joviality that reminded me of Slim Pickens, like an eager cowboy warrior, riding the nuclear warhead out of his plane in Stanley Kubrick's Dr Strangelove. Yahoo! Does that mean I shall plummet to earth like a fallen angel too? I don't know. Not all forms are hereditary. Nevertheless I want to look at this dissolution of the body between the poles of brain and bladder closely because if it comes to my turn I might prefer to leave while still lucid.

This is a mostly documentary history with a little bit of commentary woven into it. Names have been redacted to preserve a modicum of privacy. I include scanned copies of her notes to me about quotidian functions of the house, notes I wrote to myself, and some transcripts of text messages, mostly with my brother.

I've arranged the documents in more or less chronological order. The project reminds me of the time I collected as many self-portraits of Vincent Van Gogh as I could find. He painted many pictures of himself. I arranged them chronologically to see if there was a visible decline in his self-image as he neared his end. But what ailed Vincent Van Gogh wasn't dementia, and it worked in spells from which he generally recovered and during which he didn't paint very much. When he reached the end, it was swift, and it wasn't about pictures. While my mother's lucidity is up and down, there is an overall downward trend, which is visible in her notes. Her thought processes from a year ago, while sometimes cloudy, were much clearer than they are now.

28 July 2015
In the note at right, the part about the "horrible end" of cat food cans is a lucid joke, but yes, the patio behind the back door was littered with cans that had been scattered by urban wildlife, mostly raccoons, and I went out and gathered them after receiving this note.

To get cat food out of a can, I am loath to use a spoon that I will later use to eat. We have a good sterilizing dishwasher, but this doesn't matter. With the meticulousness of an Orthodox Jewish wife keeping her dairy and meat dishes separate, I am mightily OCD about segregating that which holds things for animals from that which I use to eat and drink.

I make good cornbread, and I used to make it often, especially if I was cooking beans. Part of my cornbread ritual involves always using the same bowl to mix my batter. Bowl consistency may be an obsession, but there's a practical side because not all bowls are equal. Some are too small, and I don't want to discover that a bowl cannot hold all the ingredients after I have already started mixing them. The bowl needs to be gripped well when I stir to mix everything, even though I don't want to mix to a point of absolute uniformity—I'm making cornbread, not homogenized milk. The bowl also needs to give up the batter readily when it comes time to scrape and pour it into the cast iron skillet in which I bake the cornbread. So I get attached to the bowl that works well for me, and it becomes part of a ritual not unlike the Zen artist who embraces the happy accident when he makes tea for me in Kyoto.

29 July 2015. The interior paint of the old microwave suddenly
began to peel. I replaced it with a wonderful Panasonic, which is
the smartest microwave I've ever seen.
My mother loves animals, and never turned away a stray, including a few cousins and me on numerous occasions. Candidate for the neighborhood Crazy Cat Lady, she at one point housed and cared for seven cats. Now life is somewhat simpler because we feed the feral cats and much of the rest of the suburban wildlife, including raccoons, opossums, blue jays, grackles, and squirrels, but we have no pets. At some point sooner than the lifespan of a dog or cat, I will begin to travel again. I think I can guess why my mother doesn't have a pet.

So one day, when I discovered that my mother had been watering a dog with my Holy Grail of Cornbread Batter, I felt as though I'd been kicked in the gut. In cases like this where I confront her with a grievance, she exercises a complex of what the Behavioralist Nazis call cognitive distortions, or, for the sake of their less than bright clients, thinking errors. She pretends she does not understand what I mean (the thinking error of confusion), and therefore "concludes" that whatever I'm going on about can't be too important (the thinking error of minimizing). And if there is a TV handy, she makes it clear that television is much more interesting than I am (which is probably true most of the time anyway). That incident disrupted my cornbread making for a year.

I missed my cornbread though, and have finally started making it again in a bowl that meets my physical requirements. I have done my best to quell my doubts about the metal mixing bowl's provenance with denial. If I were to ask my mother about this bowl, she would of course deny it.

12 September 2015

December 2015. I made a hearty beef stew.
Hungry—15 December 2015

In December 2015 my Cousin Jan is between houses and spends several days with us. On days that she is away in the daytime but will likely eat dinner here in the evening, I usually text her when time draws close to dinner time.

Me: Are you eating here tonight? Ideas? ETA?

Her: What r we having? I'm Leaving now

Me: What I used to call my mind is blank

Her: Lol

So at least she is on the way, and we'll figure out the menu after she gets here. Then a few minutes later—it is 5:35 p.m.—my whithered 91­-year-old mother knocks aggressively on my door the way she does when she is angry. I'm tempted not to answer that knock.

"What are we going to do about dinner?" she asks angrily. Translation: I'm hungry so why haven't I been fed already?

"I don't know yet. Jane is..."

Her face contorts to an ugly sneer. "Jane... Uh. Jane... " Then the aphasia seizes her tongue, and she just walks down the hall to the kitchen.

I lock myself in my room. Meanwhile she puts the remaining hash browns on a small salad plate in the oven, and in the microwave, which she can't figure out (though it's simpler than the last one we had), she cooks two frozen steak fingers to some degree.

I warn Jane gently: She's having a fit because we can't eat now. Doesn't want to wait. So she's cooking for herself. Then while I'm not paying attention to my phone, a series of texts arrive:

Her: Shes hungry... what shall we have? Spaghtti and meatballs???

Her: Craig-­O's Pizza?

May 2016. This is a strange note, which I believe I found
on the front door. To whom was it addressed? It refers to
both me and my brother in the third person. She says that
I am ill and that my brother has taken me to the doctor,
which isn't true. Also the usage of "DEAD TRIED"—
I'll wager that the dyslexic misspelling of tired is an innocent
error that anyone can make, yet the phrase choice makes a
strong image.
Her: Mmmmm I'm thinking of ordering pizza. You ok with that????

Her: Did you know I'm here. Already. This last message I catch, so I come out to check on Jane. My mother is in the kitchen scraping charred hash browns like dead nuked soldiers on a salad plate battlefield.

"She ate already. She may not be so hungry," I say.

"Do you want some pizza?" Jane asks her.


"She'll eat some," Jane says.

The pizza comes, and I thank the gods for GPS because once upon a time this house was hard to find with even the best directions. My mother eats two slices of pizza, and Jane and I devour the rest.

She's not really losing her mind yet. It's that she's losing her guile. She has always been demanding, close­-minded, and judgmental. She often hated the music to which I wanted to listen, the books I wanted to read, the TV shows I wanted to watch, the movies I wanted to see: no matter that it was I who wanted to listen, read, or see. My existence was not well approved of unless it conformed to hers. She didn't like things that interested me, and judgment was passed. It's just that now she's lost the subtlety necessary to hide her brutish ways. When I filled Jane in more fully on what had happened, she shared her insights based on taking care of her mother who also went down to dementia.

"It's like a baby crying. No matter what time it is, you have to feed it." That baby eats a moveable feast. She gets up, like a roll of a die, between 1 and 6 p.m. Typically we eat dinner between 7 and 8 p.m. But tonight her stomach came out and spoke: she would not wait. She would eat now.

I notice later as I straighten the kitchen that on a little salad plate in the fridge are those two chicken strips, untouched.

15 June 2016
20 March 2016. 3:30 p.m. The workers sponsored by Meals on Wheels to do several household repairs. She knocks on my door just now. "I can't cope with this," she says.

"Can't cope with what?"

"I can't cope with the smell."

Smell is one of the few senses I have in reasonable shape, and the work here has not for me been an olfactory experience.

"Are you having trouble breathing?"

"Yes. I have to go somewhere." She's more like a cat when unusual things happen in its house.

I try to anticipate the questions my brother will ask me:

"Did you do a treatment?"


"Did you do an Advair?"

"Yes...." something gets lost here in her aphasia.

"OK. I'll call [my brother] and see what he says."

"They don't have a bed."

"OK, but he's the only one who can help you with this. I can't help you."

She wanders off....

15:49 Text to my brother: Ok, now she says not to tell you anything, that she's fighting it.

"Are you gonna be ok?" I ask her.

"Yeah," she says, "I'm fighting it."

She's been cooking and had her mind on other things.

By the way, the odors of her cooking are a hundred times more pungent than whatever lingers from Friday's construction work. What we're dealing with here is actually some sort of emotional battle played out upon a topography twisted by dementia.

19 June 2016. The two things that had fallen had nothing to
do with her hunger. Apparently she just changed horses
in mid-note. A speaker had fallen off the wall in the den
where she watches television. She didn't remember what
the other, outside thing was. I think it may have been
one of the abundance of limbs falling out of trees during
the spring storms. I made sure she got something to eat.
29 March 2016. The workers necessarily move things around a bit to get their work done. Sometimes they're doing us a service because I certainly don't want to get caulk or wood shavings all over my nice clean whatever. But it's tweaking her paranoia, and now, instead of me, she has two strangers of another race to accuse of stealing her trash can.

This morning she couldn't find her TV remote control, and it didn't help that it turned up in the living room, but chances are she left it there when she went out on to the porch for a few minutes, as she is wont to do, to stare out at the circle as if to catch it still in the act of whatever mischief it performed in the night. But every poor boy knows that a remote control isn't worth much unless I steal the cable box too.

She's still diplomatic enough not to accuse them point blank of stealing her remote or her trash can or that wallet in which she keeps her Social Security and Medicare cards. The workers found the wallet in the living room when they moved the couch out from the wall so they could repair the hole in the ceiling, and they turned it over to me. She swears she last had the wallet in the den, so her suspicions began when they did the right thing. The last time she misplaced the wallet, she was accusing me and searching my room. She's also asked me a dozen times if I have her trash can in my room. She also came to me with a box of spent checkbooks, but she couldn't tell me whether she wanted me to hide or shred them.

Text message to my brother: I'm more amused by all this than anything, but if she's starting to stop the workers to interrogate them about things that she secretly suspects they've stolen, it might be helpful to get her out of here, at least some of the time. Steve has told me to clear counter tops and to empty cabinetry below the counters tonight, and she is particularly territorial about the kitchen (Freud should have written volumes about women, kitchens, and food), so can you maybe get her out of here tomorrow while they start tearing up the kitchen?

May 2016. Cooking canned biscuits in the microwave proves to be a nasty disaster.

I put the new Keurig where the old coffee maker was, and I moved Mr Coffee to the other drainboard. My hope is that the Keurig is simple to use that she would take to it because she complained about Mr Coffee's complexity, even though there is little more to Mr Coffee than what she has been doing for the past thirty years (it wasn't really the complexity, was it? It was the novelty, as it is with the Keurig). The kitchen is small and cramped as it is, and now with an extra coffee maker it's almost unusable. Though I push the Keurig back against the wall when I'm not using it, I have to pull it out from beneath the counter in order to open the top. Also we no longer need the little electric oven—a glorified toaster oven—since the new range has a working oven in it. I suggested that store the oven and the Mr Coffee and put the Keurig where the electric oven is now. This would go a long way toward freeing drainboard on both sides of the sink, but she visibly ruffled her feathers. "I just won't drink any coffee then." There's nothing like that old martyr pose to drub someone over the head with guilt. Being this woman's son, I celebrated by drinking both remaining KCups of coffee, all we had left until tomorrow's shipment gets here. I guess the thing to do is go ahead and store the oven and the Mr Coffee and put the Keurig where the oven is. After all, my brother and his wife will shop for us on Thursday, and they'll need a place to put the groceries when we carry them into the house.

Occasionally these days I find the microwave displaying the word "Child." Puzzled, I thought at first it was like a "Check Engine" light on a car—a harbinger of forthcoming trouble. But today it dawned on me that it's more like the locked condition that I discovered on the dishwasher a while back. The microwave, confronted with a nonsense sequence of button pushes, protects and locks itself from any further tampering by what it presumes is a child. Fortunately, this condition is easier to reset than the corresponding condition on the dishwasher: I simply press the Stop/Reset button, and I'm back.

OK, I was close but not completely precise. Here's what the manual says:

Child Safety Lock

This feature prevents the electronic operation of the oven until cancelled. It does not lock the door.

To set: • Press start 3 times. “Child” appears in the display window. "Child" continues to be displayed until Child Lock is cancelled. Any pad may be pressed but the microwave will not start.

To cancel: • Press stop/reset 3 times. The display will return to colon or time of day when Child Lock has been cancelled.

Note: I can set Child Lock feature when the display shows a colon or time of day.

So somehow she's pushing the start button three times and putting it into this locked mode. Or maybe the
random pushing of buttons in a nonsense sequence cause the oven to curl up in an electronic fetal position and just say "Child."

My brother texted: Obviously someone has been 'diddling' with the controls.

Yes, exactly. And what she does just coincidentally happens to be what it takes to put it into this lock mode. In the case of the dishwasher, she puts trash bags that are ready to be carried out on the part of the floor over which the dishwasher door opens. When it opens the trash bag presses against the control panel and sets that lock condition.

10 May 2016. The early stages of dementia involve vivid dreaming. My mother on several occasions has asked me who was here. She hears voices (which isn't likely in reality since she can't hear anyone if she's not looking at them to read their lips). She hears knocking or some other sounds. She doesn't surrender the faux reality of these dreams easily. I'm going to tell the story of the most dramatic example of vivid dreaming from the beginning even though I didn't realize what was going on until sometime later.

I was up while things were happening, but working, so I didn't know anything unusual was going on until she knocked on my door.

Around 4:15 a.m. she dreamed I was in my room, moaning and dying. Apparently she tried to open my door in her dream, so when she actually got up, she went not to my room but next door, woke the neighbors, said I was hollering or making a lot of noise but not answering when she knocked.

Naturally the neighbor called 911.

At 4:30 she knocks on my door. I'm at my computer, working quietly, and not even listening to music. "Stay here," is all she says. She doesn't seem surprised to see me standing in the doorway and looking quite normal. Then she walks into the living room. I stay there for a bit, thinking she's going to show me something. But she doesn't come back, so I go into the living room, and, much to my surprise, she's talking to a policeman on the porch. Outside there are three emergency vehicles, including an ambulance and a police car.

I ask the policeman what this is all about. He says that there was a 911 call. I ask if it was her Lifeline button, and he says no, that she had been over to the neighbor's and the neighbor had called it in.

He asks if I am OK, and I said I was fine, and that was all he needed to know.

I mention to him that she has dementia....

But fortunately they went away as quickly as they showed up, and nobody got into trouble.

As we are going back into the house, Mom looks at me and says, "Don't do that again."

18 May 2016 It's Wednesday, and tomorrow my brother does the grocery shopping according to the list I send him. To my thinking, running out of things the day before shopping equates to a gentle landing in the food management department. But for my depression-era mother, running out of anything is cause for panic and a breakdown of reason. We are out of food for the feral cats. So rather than leaving them to their own devices—they are wild animals after all, and the back yard is a dense menagerie of predators and prey—she's feeding my frozen hash browns along with frozen, oven-ready garlic bread to the feral cats and raccoons. I'm not talking about leftovers. I mean freshly unpackaged food for people. Sigh. I like those hash browns. I'm ... sad is only one emotion ... to see them wasted like that. Krazy Kat Lady.

25-26 May 2016. Last night and continuing this morning: Temper tantrum about her phone service and her medication. I tell her that my brother will bring her medication this afternoon, but that doesn't placate her. My sister-in-law, who has become the angel where both my brother and I fear to tread, explains that there's a phone wiring problem. We have what telephone technicians call a broken house loop: the wire is broken and the connection doesn't reach the jacks. The problem is unsolvable short of a $200 repair call. More expediently, we have the base unit of her phone connected to the box where the inside and the outside meet, and she can carry the hand unit of the cordless phone wherever she goes. But that does not placate her either: the only thing she understands is that she wants the base of the cordless phone on the table by where she sits on the couch. There isn't even a jack there anymore. She doesn't care about that. She just wants what she wants. Nothing else matters: I told my sister-in-law, she's not really sure what's wrong, but she's damned sure that it's my fault.

3 June 2016. About ten to three a.m., Mom knocks on my door and says, "Look how dark it is."

At first I think that the street light in the circle has gone out—which it does maybe once a year—so I step into the hall so I can see out through the living room windows, but the faithful eternal sodium plasma still bathes the circle in its yellow glow. "Do you know what time it is?" I ask her. "Look at the clock." I point at the verbose clock that I bought her. As much as possible, it spells the date and time out. It finally clicks on her that the time is 3:05 a.m., not p.m., and that's why it's dark. She was embarrassed when she realized her mistake.

25 June 2016. Lock run locks an lockss.
About a week ago I was rinsing dishes in the sink and putting them into the dishwasher. I emptied a full cup of what looked like coffee and milk, and the odor that rose up to my nose told me the whole story. She had wanted a cup of coffee, but she hadn't read the cartridge carefully before she put it in the Keurig, so she made mint tea. I'm sure that the clash between expectation and reality forged a horrid dissonance in taste. I went to where she was watching TV and said that the first two drawers under the Keurig have coffee and the last one has tea, but she would not listen to me. In fact she didn't speak to me for a couple of days after that, but finally brought cherries to my room when I had just eaten dinner. My mother is very much into the Freudian thing of how food is love from birth until death, and I'm stubborn about not eating when I'm hungry. Having endured her table through my childhood, I'm particularly obstinate about not being fed against my will now. So her gesture of peace through a bowl of cherries fell rather flat. I did however label the drawers: Coffee, Coffee, Tea.

Anyone who reads this will see how impatient I am and ill qualified for this job. Yet in this house of care I am myself as much a patient as a caretaker. The responsibilities fall to me because I have the ability to respond. I passed through a depression from 2013 through 2014. I pulled out of it by taking baby steps in a simulated life in, of all things, World of Warcraft. That slow progression from noob to warrior made me this house's organizing force. I'm not doing rocket science or brain surgery, but I carry out the trash barrels on Wednesday afternoon and bring them back in on Thursday mornings. I make the grocery lists, and while a lot of that list includes food that my mother likes and can put together herself—she loves strawberries drenched in ranch dressing, and she eats a lot of chicken pot pies—I'm the one who cooks a hot meal now and then or who at least knows how to cook biscuits out of a can in a proper oven. I spot problems that need to be fixed, and I find ways to fix them, or, failing that, I call in my brother who has some know-how and a little cash. Most of all, though, my circumstances in life have burned my every bridge. I am now for all practical purposes retired, and I have no option but to write. Suddenly all the excuses that I had are gone. My bridges are burned, and I have arrived.

No comments:

Post a Comment