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.

il vento

I handed him five dollars.  “Anything?” I asked.

“Yes, anything,” he said.

The guy had been sitting with his sign in front of the co-op for a few weeks now.  Today was the first day that I wasn’t too compassion fatigued to read his sign and make eye contact with him.  He was a nice young man wearing a sweatshirt from a local liberal arts college, smoking and listening to a podcast on his phone.  Panhandling? I wondered.  Research project?  Performance art?  Possibly all three.  He reminded me of Lucy in the Peanuts comic strip with her psychiatric care stand.  I wondered what it would be like to unburden myself of the hardest thing weighing on my mind today.  

My mother is with my brother today.  We had been scheduled to drive to St. Peter but on Wednesday mom called me at work to say that she would be helping my brother clean and fix up the house that he just bought so I should cancel our trip to see her sisters.  I was a bit puzzled by this.  Mom hasn’t cleaned her own home for quite a few years now.  The last time she helped me with yard work she pulled up all of my perennials.  When I noticed last week that her clothes and towels were getting dirty, I offered to start doing her laundry and she was thrilled.  These are the things that I observe when I am with her.  I have tried to talk with my brother about this but I get a blank stare when I do.  I don’t think he sees the same things.

At lunch on Wednesday I left my brother a voicemail asking him to call me and wondered what to do.  As luck would have it, I had planned to go to a support group after work for adult children who are caregivers of parents with dementia.  The group was really good.  I wish to observe the confidentiality of the specific things said, but in general it was a gigantic relief to talk with other human beings who think horrible things about their demented parents, who get weary having the same conversations over and over again at the dementia improv olympics, who wish they weren’t undermined so easily by family dynamics and old hurts, and who love and miss their parents so deeply that they show up to take care of the frightened, vulnerable, beautiful versions of their parents that they get each time they see them.

I told the group that my mom wanted me to drive her to my brother’s and help clean his house but I wanted to stand back, let my brother and my mom have time alone together and see what happened.  The group said they thought this was OK. 

On Thursday I texted my brother and asked him to call me.  I asked if he was going to pick up mom and bring her back.  “I guess,” he said.  I called my aunt to cancel our trip and went to mom’s after work to set up her pills, buy groceries and exchange dirty laundry for clean.  We picked out a pie for her to bring to celebrate my brother’s birthday with him.  Then I went home and stood back.

Today I had breakfast with my kid before dropping them at a debate tournament, then had lunch at a fancy bakery and luxuriated in shopping alone at Target and my co-op.  My phone was on and I thought of my mother and my brother.  Part of me wondered if there was some magical way that neither one of them could see her Alzheimer’s and because of that they were having a wonderful time together.  Maybe I was the only one who could see her Alzheimer’s.  Maybe it disappeared when I wasn’t there.  Maybe that’s why my mom cried whenever she saw me.  If the world was that magical I might as well take the guy with the sign up on his offer to vent my grievance, my worry, my dearest wish to him and the universe.  I handed him five dollars.

“I wish my brother would help me take care of our mother with Alzheimer’s,” I told him, feeling myself tearing up.

“That’s all you want to say?  You’ve got a whole five minutes.”

I stood there and thought for a bit. “It makes me feel really sad and alone.”

I thought for a bit more.  “That’s it.  Thank you.  I feel better.”

Blue blazes

Last month I stumbled through sections of the Superior Hiking Trail near Grand Marais.  The trail is marked with blue blazes which I think are the origin of the phrase, “Where in the blue blazes am I?” 

It’s apt for the days when I feel cut off in stretches of grief where there is no phone signal.  I try to write my way through, typing a trail across the blank page.  My mother can’t remember my brother’s birthday and I’m not sure why this is so upsetting to me.  Every week we buy birthday cards when we go grocery shopping.  I keep a list of everyone’s birthdays on my phone and a record of whether she’s sent a card or not.  This preys on her mind, she still wants so badly to get this right.  This week she asked over and over again for the date of my brother’s birthday.  Over and over again I told her that his birthday is later this month, we bought him a card last month, it is on her desk with the other birthday cards. 

The story of my brother’s birth was one of my mother’s favorite stories to tell.  My brother and I were both Lamaze babies way back in the 1960s before natural childbirth was a common option. Drug free births were another gift she gave to make our childhoods better than her own. 

My brother was more than two weeks overdue.  His birth had to be induced with Pitocin, so mom had contractions that were unnaturally painful and strong.  The umbilical cord was wrapped around my brother’s neck.  Mom had to stop pushing so the doctor could reach in and untangle him.  Having experienced childbirth myself, I don’t know how you hold back pushing when contractions threaten to break you in half but she did it.   I feel closer to my mother somehow when I think of my brother’s birth than my own.  When my kid was born the first time I saw their face I thought they looked exactly like by brother.  I felt my mother’s life echo in my own.

I love my brother and I can’t connect with him.  We are losing mom.  I can’t understand how his life can be too overwhelming for him to be with her.  I can’t understand how he can withhold the comfort of his presence.  There is so little left of mom’s prefrontal self but her motherly mammal self is still there.  It’s there when I hold her and hug her.  She still smells like our mother.  She smells like sweet corn and rain.  I miss her so much. 

I wish I could grieve with my brother.  He is the only other person in the world who knows what a beautiful mother she is, who could know how devastating it is to lose her.  And yet I know what has happened every time I have gently tried to broach the subject with him.  I am met with denial.  Either he doesn’t see what I see or he doesn’t see the value in making time to be with her as I do.  I feel rejection of my mother and myself.  It hurts. 

I have regular arguments with my brother in my head.  I want to tell him, “Mom is disappearing and she is aware of herself disappearing.  She is scared.  She wants more than anything to be with you.  One day soon she won’t recognize you.   One day soon she will be gone.  Please make time to be with her.  It will help her and it will help you live with yourself when she is dead.”

I don’t.  I’m afraid of making him too scared or angry to show up on the rare occasions that he does.  When I do see my brother, I remember that I love him.  I feel how shut down he is.  I keep thinking, if only I could talk with him about mom at the right time, if I just phrased my words correctly, I could reach in and find the sweet, loving person he started out as, before life pounded the sweetness out of him, hardening him into what he’s had to be to survive.  So I do this dance, reaching out to him regularly, resisting the urge to channel my anger at Alzheimer’s towards him, girding myself for rejection, making room for possibility. 

My mother has also forgotten my kid’s birthday although she was present when they were born. She used to tell the story of how I couldn’t be with my baby right away because I needed to rest after 26 hours of back labor and a C-section. She would tell how my baby went to their dad instead. My mother got to watch my husband meet our kid whose birth came after so much death. She would smile at the memory of how proud he was to hold them for the first time. I couldn’t be there, but having my mother’s memory of this moment is somehow more dear to me than if I had been there myself. It’s proof of how shared love and shared memories persist.

Blundering my way through grief, it helps to remember all the birth days.