Going home

Some mornings I find mom in her room at memory care with clothing and pictures packed half-hazardly into her laundry basket.  She sits on the edge of her bed, announcing that she is ready to go. “The people here are very nice,” she tells me, “but it’s time to go.”

“Mom,” I say.  “Can we sit down and talk?”

I have mom sit in her green chair by the picture window.  I sit on a stool beside her.  She watches me with great concern.

“Mom,” I say, “You have Alzheimer’s.”

“Shit!”  Mom is genuinely surprised.  She buries her face in her hands. 

“I’m really sorry, Mom. 

This conversation is heartbreaking, but it is less heartbreaking than the dozen or so times that we have had this conversation before.  

“The memory, it’s getting worse,” she says.

“This is so hard, Mom.  I wish I could figure out something else, but this is the best I can figure out for right now.”

In the time it takes for me to hug my mom, she brightens and moves on to the next thing.

“Can you help me put this stuff away?” she asks, gesturing to her laundry basket.

“Sure,” I say and she’s always surprised how quickly I can figure out where everything goes. 

Some mornings I find her sitting with her next door neighbor, another woman in her seventies with white hair and bright blue eyes who walks the halls with a great sense of purpose.  They sit on the sofa by the floor to ceiling windows at the end of the hall, chatting about the trees and the clouds with great enthusiasm. 

Some mornings mom is frantic to see me.  “I screwed it up,” she says. 

“What happened?” I ask.

“I missed the family get-together.  I got the date screwed up and I missed it.”

“I’m not aware that there was a get-together this week.  We’re going to see everybody on the twenty-third.”

“Oh!  Let me write that down.”

“It’s here on your white board.”

“Circle the date.”

I circle the date written on the white board next to her calendar clock.  The date that is already underlined three times.

Some mornings mom has gone back to bed after eating breakfast. She is so happy to see me.  “Are the cows at the farm?” she asks.  She is somewhere between asleep and awake.  I open the shades and wash her glasses in the sink in the bathroom and bring them to her with the little Shutterfly book printed with pictures of the farm. We sit on the edge of the bed and page through.  “The cows and the cow barn are gone,” I say.  “But the cow paths are still there in the grove.  We’ll go down and see them later this month.”

Some mornings I find her sitting on a chair watching an old episode of Gunsmoke on the TV in the lounge, the only ambulatory person surrounded by a sea of folks in wheelchairs and geri chairs.  “Want to go for a walk outside?” I ask.  She smiles so radiantly it hurts.

Every morning when I visit we go for a walk.  Mom enters the outdoors like she is being reunited with her oldest, dearest friend.  She delights in the air, the light, the sky, the trees.  She points out the cone flowers, the cat mint, the salvia, the hosta blooms as we pass each one.  “Look at these purple flowers,” she says.  “They’re still here. Look at how they keep on.”  I don’t think memory care will ever feel like home but I’m glad mom feels at home when we are outside with the purple flowers.

Jersey Queen

Yesterday I took my mom to the opening day of the Minnesota State Fair and by some miracle the dairy cows were there.  I had read that only beef breeds would be present at the beginning of the fair but when we walked into the cattle barns there were Ayrshire, Brown Swiss, Guernsey, Holstein, and Jersey cows bedded down in straw and arrayed by county, as 4-H kids sat next to them on camp chairs eating breakfast.  My mom grew up on a dairy farm and raised prize-winning Jerseys: sweet, little, golden pancake-colored cows with maple-syrup brown eyes.  They give rich milk, higher in butterfat than Holsteins.  My mom and her Jerseys went to the State Fair and to Nationals. Mom was a Jersey queen and a dairy princess.  We walked up and down the aisles of the cattle barn and mom was in her element, present to long-term memories amid the familiar scents of hay and cow manure.  She chatted easily with the kids and their families, praising them for doing such a good job taking care of their cows.  My mom’s smiles and the smiles of the farm girls taking in mom’s compliments were too much for me.  I was the middle-aged lady fighting tears, explaining that my mom has Alzheimer’s and she used to go to the fair with her Jerseys and could I take a picture of my mom with your cows?  

It made it all worth it: figuring out the logistics of getting myself and a teenager up at six a.m. to avoid traffic and acquire a parking spot, fretting about heat and rain and COVID and how far mom can walk, keeping everyone masked and hands gooped with hand sanitizer periodically, explaining that we would go inside the barns and the horticulture building which are open on all sides but not the Dairy Building (where mom did cooking demonstrations as a home economist every year at the State Fair for 20 years), reserving and renting a wheelchair which my kid and I ended up pushing around empty and folded up because the weather was cool and mom continues to be a robust walker as long as it isn’t hot and humid. Correction: it will all be worth it if we didn’t bring Delta variant back to mom’s long term care.  

We were worn out by lunchtime. We walked back to mom’s long term care campus located three blocks from the west entrance of the fair.  She thanked us over and over for the good day.  I told her I wished I could take her to the fair every day.  She told me that she understands that I can’t and it’s okay.  I took her back up to her room, had her wash her hands and got her settled. I asked her if I could hang her pictures back up on the walls of her room before I left and she agreed. 

Two weeks ago I moved my mom to a single room because she was referring to her roommate as “that crabby bitch,” and she kept taking down the pictures from her walls and packing up all of her things to leave.  Her new single is beautiful.  It has a giant, sunny picture window.  I filled her room with plants. She seemed to have a sense of belonging for a few days.  I made a giant sign with her name in clear letters and fixed it to her door.  She kept thanking me for it, saying that it helped her find her way back to her room again.  This week she is back to taking down her pictures and packing up to leave again.  If there aren’t any group activities she spends her time sleeping or walking the halls.  The social worker at memory care is obligated to call me at work every time she opens the door to a stairwell setting off an alarm. 

I’m not sure what to say when people ask me how my mom is doing. People don’t want to hear you say, “mostly horrible,” they don’t want to hear that I worry that the majority of my mom’s moments are confusing, scary and lonely.  They don’t want to hear that I worry that this will go on for years. 

Our nerdy little household recently discovered that the acronym MCU can be an abbreviation of Marvel Cinematic Universe, Marvel Comic Universe or Memory Care Unit.  So now when I am off to visit my mom, my husband wishes me well on my trip to the MCU.  I roll my eyes with affection and tell him I will give his regards to Spider Man, the X-Men and my mom. 

This past year health care providers have been compared to superheroes.  That’s nice but I’d rather that everyone get vaccinated for COVID, enact universal health care, make it affordable for more people to go to nursing and medical school, and make being a nursing assistant a lucrative career because it is the hardest job in the world and the world needs so many more people to do this work as we are all aging. 

My mom is a superhero to me.  I am amazed by her enormous capacity for joy at seeing prairie flowers on our walks around Como Park, her glee at talking with 4-H kids about their cows at the fair, the tremendous love she expresses reminiscing with her sisters and brothers over coffee once a month. Even though it hurts, I sit in awe of my mom trying as hard as she can to be kind and loving and positive even though most of the time she doesn’t know where she is or why she has to be there.  Even though it is mostly horrible there are still days when she can remember she was a Jersey queen and when she does I want to be there.

Fireworks

It helps to remember that life exists only in the moment, within each individual breath.  The past few weeks have brought such an odd assortment and such great quantities of feelings that it’s too much to think beyond the present.  On top of that is the ephemeral quality of my mother’s lived experience with dementia.  Each moment flares into being, then fades into darkness.  Each moment is separate from the others. 

Moving to memory care has been hard.  Attention from the staff members at mom’s long term care unit has been all over the map depending on the day and hour that I visit.  It’s not the consistent, nurturing setting that I had hoped it would be.  COVID has devastated and traumatized the staff and residents of all the nursing homes on the planet over the past year.  As an oncology clinic nurse, I’m exhausted and our team is understaffed, but I can only imagine what the past year has been like for the people now taking care of my mom.  I try to bear that in mind as I advocate for her.  It’s like visiting a post-apocalyptic day care center.  Another woman in my caregiver support group moved her mom to memory care at another facility the same day that I moved my mom and their experiences have been similar.  All nursing homes are post-apocalyptic day care centers at the moment.

In my conversations with my mom since the move her constant refrain is: The people here are lovely but when do I leave?  In the very worst moments she asks me, “Is this it?  Do I stay here until they bring me out in a box?” I tell her that she needs to stay here for the time being and then I ask if she wants to go for a walk.

The route that we walk around the neighborhood is familiar to her.  She remembers the purple flowers in the gardens by the parking lot, the massive pine tree on Hamline with the long needles soft as eyelashes when you touch them. I am so grateful.  I think of this path we walk as her true home now as we watch the sparrows and butterflies. 

For mom from moment to moment, day to day, it’s horrible, okay, scary, boring, lonely.  The trauma of the move seems to have worsened her dementia but I can’t find an alternative for her.  She gets up from bed multiple times at night to tell the staff that I am coming to pick her up and take her home.  They lead her back to her bed.  They tell me she will settle in with time. 

In such starkness the good moments stand out.  One morning at breakfast I listened to her talk with another resident who also grew up on a dairy farm.  He had Holsteins and teased my mother that the Jerseys she raised were house pets, not dairy cows. Two of my friends take my mom for walks on the weekends when there is less programming.  The next day my mom remembers these visits and she shines with delight to recount them to me.  On Sunday mornings we go to chapel with some of her old friends from assisted living.  They hug my mom, greeting her like an explorer returned from unknown lands.  They sing old Lutheran hymns with clear, booming voices.

My husband remarked that these moments of pleasure are like flowers blooming and fading.  I think of them as fireworks, flashes in the darkness.  On July 4, mom and I walked in 90 degree heat.  We found chalk art fireworks on the sidewalk of Pascal Street.  We agreed they were much preferable to the noise and smoke of the real thing. We walked the same route again today.  The rain had washed them away.   

The Wild Iris

Mom is moving to memory care on Monday and it’s not as bad as I feared.  It’s actually a huge relief for both of us. 

Mom and I have lived in fear and dread of memory care for the past six years.  Mom referred to it as “the Loony Bin for when I get really bad.”  I thought that my job was to help her stay in her assisted living apartment for as long as possible. We went from mom needing me to set up her meds once a week to mom needing aides to come twice a day to give her pills.  I started doing her laundry because she forgot how to use the washer down the hall.  I started buying her bottled coffee drinks because she forgot how to use her coffee maker.  I started taking out her garbage because it stopped occurring to her to do so. Mom worked as hard as she could to stay in her apartment.  She accepted the clunky calendar clock on the kitchen table to keep her oriented to day and time, the ugly phone with her kids’ and sisters’ names on the buttons to make it easier to call us.  She faithfully wore the ugly ID bracelet I got for her in case she got lost on walks in the neighborhood.  We both were working as hard as we could.  When she would ask me if there was somewhere else she could live I would get offended.  There is no place else I told her.  This is the best we can do.

Then I got the call that police officers had brought mom back to assisted living when she got lost on one of her walks.  I hired an aide to go for a walk with her every morning and she surprised me by totally loving this.  She had been so afraid of getting lost.  I felt terrible for not hiring someone to do this sooner.  I asked assisted living to turn on an alarm so an aide would look for her if she left her apartment at night.  This was how we learned that in the middle of the night she goes down to the lobby and waits for someone to pick her up. 

I started letting myself see things I was too sad and scared to acknowledge.  Mom goes down for lunch at 10 a.m. on Sundays because she has forgotten how to make a bowl of cereal for breakfast.  Mom wears the same outfit all week.  Mom gets angry and scared and demands to move somewhere else on weekends when there are no staff people in the lobby.  Mom wasn’t asking to move back to her house.  She was asking to move someplace where there would always be someone available if she was confused or scared. 

When we finally toured memory care together in another building on her campus, it was not dreadful or scary.   The people who lived and worked there were funny and caring.  What had seemed boring and restricting to me when mom was more cognitively intact, feels gentle and safe now that she can’t tell the difference between dreams and reality.

Mom’s move to memory care breaks my heart again but I am grateful that it has turned out to be a joint decision we got to make together.  I miss my former mom so much but I love this version of my mom who continues to be kind and reasonable and loving.  It could be so much worse. It’s hard but it isn’t scary.  I’m very grateful that she isn’t scared.

We toured memory care again today because mom didn’t quite remember touring it last Thursday. I read though the moving checklist while we were looking at her new room again and realized that the people at memory care will do her laundry.  All I could think was, crap, they will see the terrible, raggedy underwear that I let my mom wear because I have been too fucking tired to take her shopping for new underwear.  So after we toured memory care we went to Target and drank Starbucks and bought pretty bras and underpants. It had been such a long time since we had fun together.   I looked at the racks of bras—purple, white, mocha, peach—and thought of the iris blooming in the early summer: 44DD domesticated white and apricot varieties in Minneapolis yards on my morning runs and 32A wild purple varieties blooming on Wolfe Lake on my bike rides home from the hospital.  I thought of the Louise Glück poem, The Wild Iris, that opens “At the end of my suffering there was a door.”  There is joy after fear.  A door opens into a world of light and beautiful colors and you can breathe again. 

Cozy dissonance

Last week I took my teenage kid along on a trip to the north shore of Lake Superior to give my husband a week alone to himself.  We stayed at a resort with good WiFi so my kid could attend high school via distance learning in the mornings and hike with me in the afternoons.  My head thought I would make use of mornings to go on solo hikes and study for oncology nursing certification boards.  My body had other ideas. The first day there it snowed.  Instead of hiking I swam leisurely laps in an outdoor heated pool as soft, fat, feathery flakes of snow fell, melting like kisses on my face and the top of my head. It shocked me and made me fall in love with being alive again. Afterwards, back in our condo rental, I struggled to explain to my kid why I wanted them to try swimming with me outside while it was snowing.  My kid is good at humoring me. I figured they would hate it and after five minutes we would head back to the condo to watch YouTube.  They went along with me.  They dashed across the frigid concrete, settled into the outdoor hot tub and then they surprised me by totally blissing out.

“It’s the dissonance, isn’t it?” they finally said, smiling at me.  “The cold air and the snow against the warm water.”  This made me love my kid all over again. 

We spent two hours going back and forth between the lap pool and the hot tub until the snow turned to sleet and it was time for our socially distanced dinner reservation at the resort’s restaurant. 

The rest of the week my time hiking was about equal with my time napping.  I didn’t study for my oncology nursing boards.  I traded e-mails with the activities director at mom’s assisted living brainstorming ways to make her keep a mask on so she can take part in more social activities.  I wrote in my journal.  I read Late Migrations, a memoir by Margaret Renkl, a middle-aged lady who writes more beautifully and graciously about nature and caregiving for parents than I ever could.  I watched the lake hurl itself onto the shore on stormy days and watched it bumble and sprawl on calm days.  I felt sad that my mom can’t hike on the north shore anymore.  I figured out that you can take a teen hiking but ultimately they figure out their own ways of filling up their soul.  I asked them a lot of questions and listened for their answers.  I enjoyed being with them and I enjoyed being alone when they preferred to stay in their room playing online video games with their friends. 

We drove home yesterday and today I went to see my mom and buy her groceries.  It was sweet and horrible and boring and heartbreaking all at the same time like always.  After the third cycle of mom asking if we could pick up groceries, forgetting that I had just put away her groceries and she had just looked in her cupboards and refrigerator to confirm this fact, I was losing patience.  I changed the subject, remarking on the orchid on her windowsill that had half a dozen blooms.  I took a picture of mom with her orchid and told her that I would put it on Facebook to show her sisters and brothers.  Then mom said, “Look at this,” and pointed to her answering machine next to the orchid.  There was one saved message.  She pushed the play button and I listened to a conversation from a week before:

Hi, mom.  It’s Saturday.  I’m just calling to remind you that I will be over to pick you up in a little bit—

I’m here!  I was sleeping. I’m here!

Oh, good.  Hi, mom.  It’s Saturday.  I’m just calling to remind you that I will be over to pick you up in a little bit to go down to Nicollet to see—

We’re going to see everybody?  We’re going today?

Yes, we’re going today.

Oh, that makes me so happy.  You have no idea how happy that makes me.

I’m glad mom, I’m so glad.  I’ll be there in a little bit…

Mom smiled at me. 

“Do you remember that from last week?” I asked.  “Do you remember going down to see everybody?”

She doesn’t remember going down to see everybody but by some miracle she remembers that it makes her happy to listen to this conversation on her answering machine every time she presses the button. It makes her feel warm and alive against the cold, blank, relentless slog of dementia.  It makes her fall in love with being alive again.  And this makes love my mom all over again.

Extremophiles

It’s been a mild winter on the north shore of Lake Superior.  The woods are wearing a lacy shawl of snow rather than a jumble of blankets. On my hike yesterday it was easy to see mosses and lichens, aglow in spring green and sea foam against the dead gray. Some scientists classify mosses and lichens as a type of extremophiles—tough organisms like the bacteria that live in hydrothermal vents—since they have adapted to growing in deserts and the arctic, living on rocks without benefit of roots, soil, flowers or seeds.

Lichens are a marriage of convenience between fungi and algae. Fungi absorb moisture and break down minerals providing water and raw materials for the algae which in turn use photosynthesis to make sugars for both of them to eat. 

Robin Wall Kimmerer writes:

The lichen, in a single body, unites the two great pathways of life: the so-called grazing food chain based on the building up of beings, and the detrital food chain based on taking them apart. 

Soft, fuzzy moss can do both things all by itself. Elizabeth Gilbert writes:

Moss is inconceivably strong. Moss eats stone; scarcely anything, in return, eats moss. Moss dines upon boulders, slowly but devastatingly, in a meal that lasts for centuries. Given enough time, a colony of moss can turn a cliff into gravel, and turn that gravel into topsoil.

I’ve read up on mosses and lichens with great interest this past year as we’ve all learned what kind of life can be eked out under the extremes of a pandemic. Nursing is a set of extremes, swinging between fulfillment and dispiritedness, sometimes in one nanosecond to the next. COVID has only made this more so. I get afraid of how long shifts will be, how tired I will be, and then I get a pig-headed thrill out of figuring out how to keep doing my job even when I’m pushed beyond exhaustion.

My mom is living in a different set of extremes with Alzheimer’s. I visit her every Sunday and she is always surprised to see me, as if I have been gone for months. I tell her that I come once a week, hoping it will comfort her to know that I have not forgotten her, but instead it distresses her to realize that she has forgotten me. I go through my checklists in her little apartment: does the garbage need to be taken out, are her clothes clean, is there food in the fridge that needs to be thrown out, is she running low on toilet paper or her favorite granola, has she hidden her house keys in her china cabinet? These things are inconsequential to her.  In mom’s estimation of reality we have finally been reunited. She wants to catch me up on her recent move to assisted living and my recent job change to nursing, which must be the reason I have been away for so long. I ad lib admiring the apartment that I moved her into four years ago and discussing a career change made almost ten years ago. We have these conversations again getting ready to go outside for a walk.  Out in the hallways I ask her to cover her mouth and nose with her mask mostly to show the staff that I ask her to cover her mouth and nose with a mask. Mom doesn’t understand masks any more. 

Outside I can enter into her present more easily. We notice the clouds, the trees, the sidewalk clear of snow, our gratitude for neighbors who keep sidewalks clear of snow.  All of these things are miraculous and tedious. I try to be grateful that she recognizes me but this is not really the same thing as being grateful.  Mom has a blankness about her that makes me miss her most acutely when she is standing right in front of me. Her life feels so desolate, so marginal.  I can make her happy in the moment but I cannot give her anything that will last.  By the time we are done with our walk, mom is engrossed in lunch is being delivered so I leave to buy her groceries and drop them off without going back up to her apartment.  I feel lazy, cowardly and ungrateful for this but I’m too tired to face being welcomed again after months away when it has only been minutes. 

There is the odd Sunday when I’ve had enough sleep, when love makes me brave enough to see that however much I miss my mom it’s nothing compared to the moments when I see how much she misses herself, everything she used to be and know and do. I see how hard she tries. She is clinging to stone in the middle of winter, somehow still soft, somehow still so lovingly alive.

When I get a break, like this weekend’s retreat in Grand Marais, I sleep and I grieve for my mom.  I feel how empty I am, but also how that emptiness is more open and spacious than it was before.  I start thinking about how compelling the prospect of switching to hospice nursing is to me.  Hiking on the north shore I realize that I don’t always love eating rocks but I’m good at eating rocks and sometimes they are satisfying to me like nothing else I know.

More beautiful than it needs to be

I live five blocks away from where George Floyd was murdered and the week before last his murderer was let out on bail. The response in my neighborhood was quiet except for police helicopters buzzing all night long.  By Friday night I was fried but I stayed up late watching a movie with my kid because when your 15-year-old expresses an interest in hanging out with you, you jump on it no matter how tired you are.  At midnight I checked my phone and saw there were three voicemails from my mom’s assisted living: the first that mom was missing and they couldn’t find her, the second that they had tracked her down at my brother’s, and the third that my brother had brought her back but her purse and keys were missing.

I couldn’t sleep that night. I spent the next morning on the phone with the manager of assisted living and my brother piecing together that mom had told her granddaughter that it was fine for her to leave assisted living.  My niece picked her up and brought her to my brother’s house in Wisconsin.  They rode in the car with the windows up, went out to a restaurant and shopped at a grocery store. I explained to my brother that residents can go for walks outside but they can’t go out to restaurants and grocery stores.  I explained that mom can no longer tell the difference between reality and what she wishes were true.  I apologized to the manager of assisted living and we agreed that mom would have to quarantine in her apartment for two weeks to keep the other residents safe.  So far no one has died from COVID in mom’s residence and we want to keep it that way.  I was grateful that I would still be able to visit her in her apartment while she quarantines. Afterwards I called my mom and broke the news to her that she wouldn’t be able to leave her apartment for two weeks. She wouldn’t be able to go on walks. 

I got off the phone and vented to my husband. I was exhausted but too furious to take a nap, and sick of being cooped up under a mask in a clinic all week.  It was a sunny fall day so I went hiking at Gray Cloud Dunes.  I felt like an addict out for a hit and the woods and prairie did not disappoint.  They were gorgeous to the point of being surreal.  It’s strange to drop into a place so beautiful and welcoming straight from a week’s slog of caretaking.  How is it that this world that is so much crueler than it needs to be right now is the same world that is also so much more beautiful than it needs to be?  I remembered an afternoon when I was about 12 and we lived in the woods. I went walking alone in the ravines after school in early October surrounded by maple leaves such a luscious, vivid yellow I could taste them with my eyes. The next day mom was home after school—a rare treat—and I wanted to show her the golden wonderland I discovered the day before. We walked and walked but could not find it. We found lots of trees with golden leaves but that magical shade of yellow had browned to ordinary. At the time I felt sad that I couldn’t share an enchantment with my mom but now as the mother of a young person I like to think that maybe the real gift I gave her that day was a child’s wish to share something beautiful with their mother.

Last weekend I took a ton of pictures with my phone as I hiked through the woods and prairies blazing in Technicolor, then I went home and sent SOS messages to my aunts and friends to ramp up their phone calls and cards for the next two weeks while mom is in quarantine.  I slept a little that night.  The next day I went for my scheduled visit with my mom, suiting up in a mask and shield, completing the symptom questionnaire, getting my temperature and oxygen saturation measured like I do every weekend before going to her apartment.  Mom was apologetic.  She knew that she’d done something wrong to be confined to her apartment but I couldn’t tell if she remembered being with my brother two days before.  

We had the same conversations over and over about the weather, why she can’t leave her apartment and how hard this is.  Suddenly, my mother surprised me by asking about my job.  She hasn’t done that in weeks.  I told her that I help people going through cancer and it’s gratifying but it tires me out.  I told her that I go on hikes on Saturdays to recharge.  She asked about my hike.  I wiped down my iPad and showed her how to swipe left to page through the pictures of Gray Cloud Dunes from the day before.  It wasn’t much.  It wasn’t as good as a walk together outside but it got mom out of her apartment for a few moments. I wiped down my iPad and put it away. We returned to the same conversation about the weather, why she can’t leave her apartment and how hard this is.  She started to get tired.  Her lunch arrived outside her door.  I brought it in and set it on the table.  I blew her a contact-less hug and kiss, promised to be back again in a week and to call her every day at lunchtime, then I went home and took a long nap.

Area of Outstanding Natural Beauty

One of the things I love about the UK is that there are places on their maps designated as Areas of Outstanding Natural Beauty.  It just sounds so British.  I expect them to be adjacent to Tea Shops with Above Average Victoria Sandwich.  Traveling in the UK was like visiting Narnia.  I’m so glad I got a chance to do it.

Travel opens you up and cultivates a lifelong curiosity about everyone and everywhere, even the people and places in your own back garden, as they say in the UK.  Maintaining curiosity and gratitude are getting me through this summer and this pandemic. I’m exhausted by work and uncertainty and by the sameness of my days and weeks. 

There are so many things to grieve, losses the enormity of which we won’t realize until we are safely through this.  The loss of my mother goes on and on.  I had hoped to progress to longer in person visits with her but a staff member at her residence tested positive for COVID last week so we are back to brief window visits.  She is down to about three subjects of conversation. We cycle through these again and again like fish going around a fishbowl.  Fifteen minutes of this exhausts both of us.  I wish I could take her to a pretty place and just sit and be.  This week one of her topics is a trip she thinks she took last weekend, a retreat with a group of other women in Wisconsin, “interesting women doing all kinds of important things,’ as she puts it.  I’m not sure what to say.  I know that she hasn’t left assisted living since March.  I think part of her knows that she hasn’t left assisted living since March too, but this memory seems to give her such comfort.  In the end I told her I was glad she had an escape.

I went for a hike today with a friend whose mother died last year.  We agreed that we missed our mothers, talking with them and sharing our gratitude for the benefits we reap from all that they taught us: the plants growing in our gardens and on our hikes, the meals that we cook for our families. 

We hiked at Grey Cloud Dunes, one of the areas designated on maps as a Scientific and Natural Area (SNA).  It’s a park but there are no restrooms or formal trails.  It is the Minnesota equivalent of an Area of Outstanding Natural Beauty.  I have been exploring a new one every weekend.  Researching them and planning these little trips stirs my curiosity and gives me something to look forward to all week.  Last week I was searching for a Rhombic-petaled Evening Primrose at an oak savannah SNA in East Bethel and today I found one at the dry prairie SNA in Cottage Grove.  The flowers were as yellow as the goldfinch we saw showing off at the top of a poplar tree.  They were proof that there are still treasures to be found and magical places on the map to be explored while stuck in our home state and socially distanced, carrying with us our mothers’ abilities to recognize wildflowers and birdsong.  Going outside into the natural world gives our mothers back to us.  The enormity and beauty of the world is humbling but also comforting and encouraging.  I know where my mom is literally on Google Maps as I make my way through road construction every week to see her, but I am so grateful to know where to find my transcendent mom on the map every weekend as well.

Living in the alzheimer-verse

I went hiking in a beautiful prairie this morning near Cannon Falls.  The wildflowers were like old friends.  I know their names because my mom introduced them to me: beebalm, bellflower, coneflower, milkweed, verbena, yarrow.  

There is an alternate universe in the back of my mind where I imagine what my mom’s life would have been like if she never got Alzheimer’s.  In this universe she would have been on the hike with me today.  We would still go canoeing and she would steer because she’s better at it than me.  She would still have her house and her butterfly garden.  She would drive to see her sisters whenever she wanted. 

But mom didn’t get to live in that corner of the multiverse. 

In this universe she has had the hardest time figuring out the day of the week, the time of day and how this corresponds to the carefully labeled pill boxes that I set up for her.  At lunchtime when I call to check in with her, I ask how many days of pills she has left in the box and last week they were used up by the middle of the week.  I had to explain that this wasn’t safe and that it would probably be best if someone were bringing her pills to her. 

Researching how much it would cost to have home health aides administer her medication, I kept translating the prices into what the same amount of money would have bought my mom in the alternate non-Alzheimer’s universe.  Having her pills administered in the morning would cost the same as coffee and a scone at her favorite café.  Having her morning and evening pills administered for one week would cost as much as an annual membership for mom and one guest at the Minnesota Landscape Arboretum.  Having her pills managed and administered for one month would cost as much as having mom and her grandchildren outfitted for a week of camping and canoeing in the Boundary Waters.  

This is completely irrational. I value good care, I want my mom to be safe. We are fortunate that mom was careful with her money and saved well for her retirement.  I have a spreadsheet where I run forecasts to see how quickly her assets would be exhausted by extra care and she still has money left for more than a decade of assisted living.

I called to set up home care the next day.   At lunchtime I checked in again with her, worried how she would react but she was less anxious.  It surprised me how happy she was about getting visits from the pill ladies.  It occurred to me that she has two more friendly faces in her daily life during the pandemic lock-down.  In this universe, her money is well spent. 

Living through some history

Last week, biking on the Greenway, I smelled the burning mattress before I saw it next to the tents pitched in the grass along the trail. My first urge was to dial 911 but I have lived through some history in the past month and have learned to second guess that urge. Instead I called out to the homeless people living in the tents.  An older man sitting in a wheelchair called back.  I explained that there was a mattress on fire and asked what we should do.  I asked if I should call for the fire department, if they would be respectful to everyone living there.  He said it was ok to call them.  Then a crew of arborists from the Tree Trust drove up in their pick-up.  They had been trimming branches nearby and noticed the smoke.  After another brief conversation among all of us, it was agreed that the Tree Trust crew would call the fire department.  I biked off to pick up an order from Moon Palace bookstore.  A burning mattress was no longer much of a big deal to any of us.

One of my friends observed that as history unfolds we each see just a tiny slice of it.  History happens in the nooks and crannies of our everyday routines until it spills over to obliterate and transform everything that has been familiar and ordinary. 

On Tuesday, May 26, when I called my husband to let him know I was heading home from the hospital, he told me he had terrible news to share: the night before another black man had died in Minneapolis police custody, this time at 38th and Chicago, five blocks from our house.  I might encounter demonstrations on my drive home.  Later that evening we read accounts of the killing and saw a still from the video where a police officer appeared to be grinning as he knelt on the neck of another human being. 

The next morning I got up early and biked over to 38th and Chicago before heading in to work.  It was raining. No one else was around.  Soggy cardboard signs lying in people’s yards showed evidence of the peaceful protest the night before.   An altar was made up on the sidewalk in front of Cup Foods: flowers, votive candles and a bag of gummy bears.  George Floyd died there, between the gas station and the corner store, where his face was ground into the rough pavement of Chicago Avenue as the life was pressed out of him.  I felt sick and scared but it was tempered by the tenderness of the flowers laid on the street.  I biked home, crying in the rain, pulled it together and left for work.  

After work I sat on my porch trying to read the news as sirens blared and helicopters buzzed all evening.

On Thursday I biked to work passing shopkeepers on 5th and Lake Street sweeping up broken glass from their looted shops.  On the Greenway I smelled and saw black smoke billowing to the west where the Minneapolis Third Police Precinct and surrounding businesses had been set ablaze the night before.  

On Friday morning I biked to work passing broken glass and the torso of a female mannequin on the sidewalk at 5th and Lake. White looters with a shopping cart picked through the remains of the same Latino-owned shops I had passed the morning before.  Windows that had been repaired had been rebroken overnight.  At work that day I transferred prescriptions for patients because their pharmacies had been destroyed or damaged by riots.  That evening we ate pizza from Jakeeno’s at 36th and Chicago like we do every Friday night.  It was familiar and comforting.

After dinner helicopters continued to buzz overhead but the smoke had cleared so I sat on the porch trying to read.  Shouts and car horns sounded in the distance as mobs moved down Lake Street from east to west.  A pick-up truck sped down my street, bumping over the berms of gravel that cover water pipes supplying homes while our water mains are relined.  Moments later I smelled and saw black smoke billowing above the houses and trees to the north. As the sun set, the sky turned red.  I learned from a friend on Facebook that the Shell gas station three blocks away was on fire.  Houses and apartment buildings stand next door to it on the same block.  The rest of the night my husband and I followed that fire and several others on news streams from Minnesota Public Radio and the Star Tribune documenting events happening blocks from our house.  On the other side of 35W the post office and a bank were set on fire.  The National Guard moved in coming down through 32nd and Nicollet.  Early in the morning we learned from the Twitter feed of a reporter from MPR that the fire department had made it to the Shell Station.  I went to bed and slept for a few hours.

The next morning I woke up and numbly went about my Saturday routine.  I biked to my favorite bakery, passing the burned out shell of a car at 35th and 35W, as I skirted around the still smoldering buildings near Lake and Nicollet.  Biking past Uptown I saw people looting the Verizon store and windows boarded up along Hennepin Avenue.  Miraculously, the bakery was open.  On the way home I saw that the co-op was closed and boarded up.  The fire station across the street was open.  I had a box full of pastries for my family but I saved one for my mom and gave the rest to the fire fighters.

Then I drove to see my mother in Como Park, taking highway 36 from the north avoiding the wrecked areas at Snelling and University to the south.  Driving in from the north, I passed the memorial to Philando Castile. In July of 2016 he was killed by a police officer at Snelling and Larpenteur six blocks from where my mom lives.   

Mom didn’t mention the riots when we had our window visit that morning.  She doesn’t remember where I live so even if she saw the fires on TV, she wouldn’t be able to put it together that I live three blocks from Lake Street.  She wasn’t worried about me and I was grateful for this. We had the same conversations several times over like we always do and I made sure she got her apple Kouign-amann. 

The rest of that week was a blur of sirens and police helicopters, meetings with neighbors, locking up our waste bins in the garage every night and filling buckets of water in our yards in case there were more fires, writing e-mails and checks from an exhausted social distance. 

In the weeks since, I have continued going to work as a nurse every day, passing the burned out shell of the post office when I take 31st instead of my usual route on Lake Street since it’s still blocked off at Nicollet.  We have progressed from window visits to in person visits at my mom’s assisted living.  I try to call her at lunchtime every day.  She is getting more confused about what day it is and when to take her pills. She seemed relieved and readily agreed when I asked if we could have a home health aide administer her medications. 

In the evenings I have sat on my porch reading about my neighborhood in long form pieces in the New York Times and the New Yorker.  Jelani Cobb aptly summed up the charred remains of Lake Street as “evidence of what the world looks like when a crisis is cubed.”  38th and Chicago is now known simply as the George Floyd Memorial, a site for pilgrimage that continues to transform week by week.  At Lake and Minnehaha, across the street from the burned out Third Precinct, there is a massive air conditioned tent, billed as a community food market and set to open on July 8 in the parking lot between the shuttered Target, Cub grocery store and Aldi.

Last week biking home from the bookstore I checked to make sure that the mattress had been extinguished and the tents remained standing.  It was lunchtime.  I continued on home to call my mom.