The end of a year, the end of the world

Multiple times a day I suddenly enter my body and imagine how I would react if the retirement facility called to tell me she's gone. First, it hasn't happened, so . . . wreckage of the future! Second, nobody knows how they will react when they get news about the demise of a loved one. So much depends on circumstances. Third, suddenly enter my body implies I am out of my body a lot. Hmmm. No big surprise, but what's up with that?

As the year stutters to a close, I slog through the rudiments of keeping my life together. I wash my frayed underwear and try not to notice the necklines of my fifteen-year old long-sleeved t-shirts stretch as wide as my shoulders. Everything I wear is stained, torn, frayed, or otherwise suitable only for the rag basket. I'm waiting. Will my rags last until it is time to move to a new climate? Or will I eventually be rotating among three t-shirts, two pairs of underpants, and a half dozen mismatched socks? On the bright side, I can (almost) fit into my ancient blue jeans.

I often stand in line at the bank. As I wait and mill from foot to foot, ignoring the musak, I think about getting the call. Will I bolt out of the bank? Will I sigh and say, okay thanks for letting me know, I'll be there in twenty minutes? Will I finish my business and go home to take a long nap? What is the protocol?

I think about freedom a lot. Not freedom in a truth-love-justice-for-all kind of way. I mean, my freedom. To gain my freedom means losing my mother. This thought is an example of the cognitive dissonance I frequently experience. . . probably a major cause of my out-of-body tendencies. When I have this thought, my brain just sticks there, like a phonograph needle stuck in the groove of an old Monkees album. I can't get past it without slapping myself (figuratively speaking) in the face and reminding myself that I volunteered.

A few nights ago, Mom said she was ready for this to end. I assumed she meant life, not my visit.

“This is so boring,” she complained without much energy. I can only imagine how boring waiting for death might be, although I supposed that is what we all are doing from the moment we are born. I never used to be aware of it. As I have aged, I think about death in general a lot more, and my death in particular.

The waiting is especially excruciating for someone who can no longer process information. It must be disconcerting to be alive but trapped in a cage created by dementia. She can't knit, she can barely read. She can't follow M.A.S.H. reruns, except for the most slapstick of jokes. Words spoken by television actors no longer make sense. I focus on simple sentences, carefully constructed, familiar topics—my cat, mainly. My sister. The food. The weather.

Two nights ago, we sat together on the couch before going outside for the cigarette that would cause her brain to shut down for a while.

“I wonder if I would do better in a smaller care home,” she said.

I felt my heart skip. My stomach knotted.

“What do you think you would have at a care home that you don't have here?” I asked.

“I don't know.”

“A care home is smaller, more like a real home,” I said. “A care home will probably be less expensive. You might get better food.”

“Yes.”

“On the other hand, you might not be able to keep all your furniture. Not all care homes will let you smoke. And you'll be stuck with whoever the other residents are . . . whether they can talk at all. Plus, I'm not sure the care home could manage your medications for you.” I pictured a bleak future consisting of many trips to the pharmacy for mirtazapine, atenolol, and oxycondone.

“Hm.”

“Why did this come up?” I wondered.

“I was thinking of Sunny's care home.” Sunny is Mom's friend who lives in a care home in southeast Portland.

“It would be great if you two could be together,” I said. “When I called them, they said they do not take smokers.”

She grimaced.

“We could get you the Patch.”

“It's time to go outside, isn't it?”

We went out for her evening cigarette. When we returned, her brain was an empty boat. She tugged off her red fleece smoking jacket and put it on the wing of her visitor's chair. I prompted her to take a swig of water. I checked her little fridge to see if it was time to replenish her gluten-free bread. I filled up her dish of snacks (tiny gluten-free peanutbutter crackers, one chocolate chip cookie). We sat together on the couch and watched the end of M.A.S.H. While we watched, I was aware of her shallow breathing.

She walked me to the back door at 7:02 pm. We sang “She'll be coming round the mountain” as we walked. I kissed her forehead at the back door and went outside to my car. She came to the window to see me off. This is our evening ritual. I turn my car around, and before I head down the hill, I lean out the window and look back. She gives me a peace sign, holding up two fingers and smiling. Even though I don't think she can see my arm hanging out the window, I return the peace sign and keep waving, driving away with one hand, until I'm around the bend, out of sight.

'Tis the season to remember

Back in 2014, I knew something was wrong with my mother when she stopped folding her towels correctly. The proper way to fold a towel (any towel larger than a washcloth) is to fold a third lengthwise toward the center on both sides of the towel. Then depending on the size of your storage space, you fold it crosswise in half or in thirds, or you roll it up if you are inclined toward creating an elegant towel display. The point is, all edges are hidden. All you see are folds.

I was shocked to see that Mom was folding her towels in haphazard fashion, lengthwise, crosswise, no care given to exposing raw edges, no thought paid to making an attractive towel display in the cupboard.

Now, I realize towels can be folded anyway you please, or not folded at all. Who cares, not me. What I am describing here is the way my mother taught me how to fold a towel. This towel-folding habit is deeply ingrained in me. I fold all my towels like this. No rough edges, only folds. I'm all about attractive towel displays even though I only have two bath towels (one lime green, one green striped) and six mismatched hand towels. I even fold my dish towels like this, despite the fact that they reside out of sight in a dusty cupboard next to the stove.

Looking back, I realize now that improper towel folding was just one of several warning signs that should have tipped me off that Mom's brain was starting to slip. However, my tendency all my life has been to pay attention mainly to me—my life, my fears, my agenda. I noticed the improper towel folding pattern, and I remember being shocked, but I wasn't able to translate it to the next logical thought: What was happening to my mother?

Mom knew her brain was no longer performing optimally. I thought she was doing okay. She had always been so competent. I assumed she would always manage independently, right up to the moment when she gasped her last from emphysema. She had her pill management system. She was still driving (albeit somewhat sloppily). She knew what she wanted to do, I thought, and knew how to do it. I didn't question her abilities. It never crossed my mind, until the day she told me she needed help.

That's when I saw that she was messing up her checkbook. She was leaving half-nibbled muffins out on the counter. She was eating food that had been in the fridge way too long. She was spraying ant poison directly on cereal and crackers in her pantry. She was blowing stop signs and sideswiping garbage cans with her car. She was forgetting how to access her email.

Honestly, given my preoccupation with self, I doubt if anything would have unfolded differently had I noticed all these early warning signs. Thus, Mom was the initiator of our search for an independent living facility. She decided to move, where to move, when to move, and she decided how long to wait before she couldn't stand it and moved back to her condo (a month and a half). I gave her increasing support when she admitted she was having trouble shopping and managing her finances. I didn't want to force help on her. I wanted her to be independent as long as she could, even if that meant her safety was at risk.

She was okay giving up check writing privileges. But she balked when with her doctor's help, we took away her driving privileges. She wasn't happy about the loss of her independence. Who can blame her? Gradually her autonomy eroded to the point we are at now, four years later. She moved into the retirement home as a perky Level 2 (mostly independent) resident. Now she's a Level 5 (frequently ringing her call button when she can't figure out what to do). I write a monthly check to pay for adult underpants now, along with wipes and gloves. She can no longer turn on her computer, much less access her email. She can't knit anymore. She can read, but only books she has read many times before. I help her make phone calls and write notes to friends who write to her. She doesn't think about money, except when she needs some cash to pay the hair stylist every other month.

She's still walking, but with a walker (those glider ski tips really help, in case you are considering some for your parental unit). She knows where the food is, and she can get herself there on time. She remembers to ring the call button when she has an accident (she blamed ranch dressing for today's blowout).

I imagine this gradual unraveling is confounding for her. However, she's in the moment, living it one breath at a time. Me, I'm lost in the wreckage of the future. I've seen independent people, and I've seen people drooling in wheelchairs. What I think I'm witnessing is the process by which they get from here to there. I'm watching the disintegration of a life. At what point do I need to rent a wheelchair? At what point do we need a bed with plastic sheets and bed rails? At what point will I greet her and find her staring blankly at me, trying to figure out who I am?

It's not about me

I try not to think too much. It's my defense against cognitive dissonance. Cognitive dissonance occurs when my body does one thing while my brain says do something else.

I was sitting in a meeting room last week, waiting for someone, anyone, to show up. I used the time alone to write in my journal, pondering the utter powerlessness I have over the end of my mother's life. I  know the outcome. I just don't how how, where, and when. I want to know so I can be ready. My body says prepare! Prepare to flee! Prepare for the end! Prepare for the worst! My brain says chill out, there's nothing you can do.

I write in cheap composition notebooks that I buy by the dozen at Target during back-to-school. I fill about one notebook per month with my resentful whining, pithy insights, and funny drawings. I have journals going back to 1995. I plan to bequeath them to my sister. She doesn't know that yet. She can recycle them after I'm gone; at that point, I presume won't care. Possibly I shouldn't care now what happens to them, but I have a vain hope that they contain stories that will someday make me rich. Or if not rich, successful. Or if not successful, published.

About 20 minutes before the end of the meeting, my quiet time was interrupted by a rotund short-haired woman wearing flowered pants and Crocs. It was Margaret, our treasurer. The group was supposed to have a business meeting to discuss how we wanted to disperse the funds accumulating in our bank account. Because only Margaret and I were in attendance, I figured why bother, save it for next month. What's the rush? My mind was definitely back in my notebook, writing about my mother.

Margaret shoved a financial report across the table at me. I ignored it. I started drawing a picture of a big-eyed nerd in my notebook (another self-portrait, as they so often are). However, Margaret was clearly vibrating with urgency. After making her wait just the right amount of time, I stopped drawing and picked up the report.

“Did we ever make that donation to . . . ?” She nailed me with a stare, as if it were my fault that some payment didn't get made. I'm not the treasurer. Jeez.

“I don't have any recollection of that,” I said, shrugging. I opened my journal and started cross-hatching some shading around the nerd's bulging eyes.

“Well, then, this is all wrong,” Margaret said, snatching the paper back. She stuffed the papers in her bag. She sat in sullen silence for about thirty seconds. I practiced deep breathing and cross-hatching.

“How's your Mom?”

“The same, slipping away bit by bit,” I replied.

Margaret sat forward in her chair. “My mother was in a nursing home for five years, hooked to breathing machines and feeding tubes because my sister couldn't let her go.”

I tried to gauge the emotion I heard in her voice and couldn't tell if she was sad or glad that her mother had suffered for so long. All I could think of is, wow, I'm glad my sister is in France.

“Sounds terrible,” I said.

“You get along with your Mom?” Margaret asked. 

“Yeah, now that she's lost her mind, she's actually pretty fun,” I smiled.

“You want to move to the desert, right?”

I nodded. It's no secret. She's heard me mention Arizona.

“Why don't you just go? Let your brother handle your Mom. Go live your life!”

I stared at her while I tried on difference responses in my mind. I had conflicting feelings. I wanted to defend my choice—eldest daughter, obligation, payback, yada yada—but none of that felt true. Knowing Margaret, she would have argued with my rationale. She's like me in that respect. She likes to stir the pot. I know a pot-stirrer when I see one.

After a long moment, I said what came to mind. “It's not about me.”

She reeled back in surprise. I could see her mind churning: How could it not be about us? That statement calls into question the nature of the universe and the purpose and meaning of existence. Aren't we the center of everything? Argh. I used to think so, but not any more.

Countering that narrative is the reason I have twenty-four years of journals a-moldering on five shelves in my living room. All yours, Sis!

Downhill in a handbasket

As I scrubbed my bathroom floor (a once-in-a-lifetime event), I contemplated the impending end of another year. Everyday, I wonder if I will make it through another day, and everyday, somehow I do. It's silly, I know. I'm not 89 years old and sinking into dementia. Wait, what? Hmmm. When I look in the mirror, I see my mother's vacant eyes staring back at me. It's so unsettling, I have stopped looking in the mirror, which is why I often don't realize that like my mother, I have wiry black hairs sprouting out of my nose.

In the evenings after I visit Mom, I eat dinner and watch the PBS Newshour online. When it is over, my best course of action would be to turn off the computer and do something to relax. However, I'm addicted to the news. Instead of listening to music or reading a book, I listen to the pundits predicting the end of the world and compulsively play Mahjong.

I am reminded of the summer after seventh grade when I picked strawberries for two hellish weeks. I had images of strawberries burned into my retinas. I saw fat luscious strawberries waiting to be picked in every juniper and rhododendron outside my family's front porch. Now, when I close my eyes, instead of strawberries, I see Mahjong tiles. I'm not complaining. I'm sure people in war zones both domestic and foreign see lots worse things when they close their eyes.

Mom has a cough. Her smoking buddy Jane reminded me she had one last year around this time. I had forgotten. That is what living day to day does to me: My linear memory, never great, has evaporated. I went back to the medical records: Sure enough, last January, I took Mom to Urgent Care for a cough. They ruled out pneumonia and diagnosed her with bronchitis. I am guessing the same is happening now. The temperature is finally dipping down to freezing at night, day temps hover in the mid-40s, and nothing stops the maternal parental unit from going outside in the damp dark cold for her after-dinner cigarette.

Last night as we were strolling down the hall, Mom coughed as we passed by the Med-Aide who was standing at her rolling kiosk in the hall peering at a computer screen. The woman looked up and said, “It doesn't help that you are still smoking.” Then she laughed and said, “I know you aren't going to stop,” and gave my Mom a hug, which Mom returned. I said nothing. Mom clearly trusts the woman. I only see Mom for an hour a day. The Med-Aide sees her all day, five days a week. She wins.

At the end of the hall, we do our good-bye ritual: kiss on the forehead (hers, not mine), peace sign, my declaration of love, and her response. Last night, she said, “I don't know what I would do without you. You've kept me going. Without you, I would go downhill in a hand-basket.”

Today as I was scraping years of congealed kitty litter out of the corners of the bathroom floor and bemoaning my nose hair invasion, I thought about her comment. The implication is that by visiting her every day, I am helping keep my mother alive. Argh. Cognitive dissonance strikes again.