Me and RBG

“I have something for you.”

Mom often has things for me. Receipts from the dollar store. Magazine renewal notices. Donation requests. Generally, things I recycle as soon as I get home.

We walked into her bedroom. “I got this for you.”

It was an objectively ugly representation of Ruth Bader Ginsburg on a keychain. Part of the “string doll gang” – her face was made of string wrapped around and around and around a ball. She had a tag attached that said, “Women belong in all the places where decisions are being made.”

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Then I noticed two other keychains. One a “Dharma Queen” and one a fluffy white puppy. “Who are these for, Mom?”

“Oh. The dog is for Ashley and the other one is for Anne.”

I stood there, dumbfounded.

Somehow she had picked the exact correct keychain for each of us. My sister, a dog lover, and Anne, a hippie at heart.

“Mom, did you pick these out on your own?”

“Yes.”

“I love it. Thank you.”

And with this gift, I realized she still knows the essence of each of us. I could barely keep from crying. Weekly, I’ll sit on her couch with her and she’ll turn to me and say, “Do I have any children?” I nod my head and say, “You do.” “How many children do I have?” “You have three. You have a son, Greg, who lives in Winston-Salem, a daughter, Lori, who lives here in Asheville, and a daughter, Ashley, who lives outside of Atlanta.” “Are they big children or little children?” “They’re pretty big.” She’ll nod her head and stare into space. And a little part of me dies inside.

And today, I realized that she might not remember I’m her daughter, but she knows who I am.

Breakfast at Tiffany’s

I called Mom this morning and asked if she’d like to go to breakfast together. “Hm. Have I had breakfast yet?”
“I don’t know. Did you eat anything this morning?”
“I don’t know.”
“Would you like to eat something?”
“I don’t know.”
“Are you hungry?”
“I don’t know. Maybe.”
“Okay, I’ll be there in a few minutes and we’ll go to breakfast.”
“Breakfast at Tiffany’s?”
I laughed, “Sure.”

I picked her up ten minutes later.
“Why are you here?”
“I thought we’d go to breakfast.”
“Okay.” Pause. “What day is today?”
“Saturday.”
“Do I go to that place today?”
“The YMCA?”
“Yes.”
“Not usually. We can go if you’d like to.”
“No. I only go M, T, W, Th. What day is today?”
“Saturday.”
“Do I go to the Y today?”
“No. Want to go to breakfast?”
“Sure.”

We were handed menus.
“I can’t read this.”
“Do you have your glasses with you?”
“No.”
“Would you like me to read it to you?”
“Yes.”
I read the things I thought she might like. No, no, no, no. I asked her what she’d like.
“A piece of toast and some fruit.”
“Would you rather have toast or a biscuit?”
She looked at me plaintively.
“Toast is a piece of flat square bread. A biscuit is round, and a little fluffier.”
“Oh. A biscuit sounds good.”

The food arrived and we ate. I asked her how she liked her breakfast.
“Well, it’s not Tiffany’s. But it will do.”
And she laughed.

I was dumbfounded. Humor is hard. It’s one of the hardest things to master when learning another language.  And yet, even though she can’t master time, or remember what we said a few minutes prior, and is losing the ability to pair the abstract word with the concrete thing, she can still make jokes.

And I laughed, too.

Traffic Jam

I experienced my first traffic jam in Asheville today. As I was returning from running errands, I noticed the car in front of me was stopped. It didn’t appear anyone was turning. As I got closer, I realized the neighborhood wild turkeys were in the road. Just hanging out. Not crossing the road, just standing there. So we waited. I was impressed that no one tried to inch further, potentially hurting a turkey, no one honked, everyone just waited until they eventually left the road. Patience is a virtue.Wild Turkeys.jpeg

Welcoming 2020

I’ve just eaten the traditional New Year’s lunch of collard greens with bacon, black eyed peas with ham, and cornbread. Supposedly this will bring a year of wealth, fortune, and prosperity.

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2019 was perhaps my most difficult year yet. Witnessing my Dad’s health decline, and his passing, was heartbreaking. Moving my Mom to Asheville, out of what she considered her forever home, was heartbreaking. Watching her cognitive struggle as Alzheimer’s progresses is heartbreaking. Grieving for a co-worker who passed; grieving for a friend’s spouse who passed. Grieving for the state of our nation and the hate that has rooted. It’s felt as though the year was overshadowed by loss.

And for all the grieving, and difficulties, and losses, there was incredible joy as well. I work with a team who are simply amazing. They are smart, compassionate, supportive, and bring a smile (and usually a guffaw) to my face every day. I visited friends in San Francisco multiple times. I celebrated milestone birthdays with friends I’ve know for decades. I witnessed the investiture of a dear friend onto the North Carolina Supreme Court. I visited Cape Cod for the first time (and ate my weight in lobster). I completed so many jigsaw puzzles (an activity which brings me overwhelming feelings of calm and peace). I completed a Sunday New York Times crossword without relying on any hints. I spent time in person with Mom several times each week. I celebrated EJI’s 30th anniversary and heard Bryan Stevenson speak in person. I saw Elton John in concert. I witnessed two dear friends get married in a stunning ceremony in the UK. I celebrated a bat mitzvah with dear friends who feel more like family. I welcomed many visitors to Asheville, making my cozy house feel more and more like home.

May 2020 be as joyful.

Lights and Words

I search for things that Mom will enjoy. Experiences that are relatively short and have a visual or musical element to them. Conversations can be hard. Crowds and loud noises can be upsetting. I saw an ad for “Winter Lights” and thought that could be a hit. The NC Arboretum strings thousands and thousands of Christmas lights on the trees and plants throughout the grounds. I asked Mom if she’d like to go, and she said, “Sure.” So tonight we bundled up and walked the grounds, oohing and aahing at the displays. We came to an area which, from a distance, I thought was a S’more making station, so I steered Mom that way (I have a soft spot for marshmallows). Once we got closer, we were informed it was a “wish station.” The volunteer encouraged us to write a wish on the tags provided, and then hang them from the trees. I asked Mom if she’d like to make a wish. “Sure,” she said and took a marker. She finished and I told her to choose a tree to hang it from. We hung it and I read the wish. “ThiNGs will Bette Nest year.” And my heart broke just a little. I want things to be better next year, too.

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We walked a little more, and found a bench in front of the centerpiece of the Winter Lights display, a tree made out of lights that changed patterns with each song that played. We sat, not talking, and watched the light patterns. “I like that one,” I said, when a multi-colored pattern appeared. “It looks like a Lite-Brite.” Mom looked and said, “Dad and I used to come here. We loved the lights.” Again, my heart broke just a little, as this was the first time either of us had visited Winter Lights. “Tell me about when you visited.” And she did, recalling imaginary visits, where they went, what they saw, what they loved. I listened quietly and when she stopped said, “That sounds really lovely.”

 

“WORSt YEAR IN MY LIFE”

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This is what I saw when we returned to Mom’s apartment tonight, stuck on the wall just to the right of the doorway. It was right below another post it note that read

“SADDIST Thanks GivviNG”

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I asked her to tell me about the notes. We sat on the couch, her head leaning on my shoulder. She whimpered and said that she just missed my Dad so much. That she didn’t understand why he had to die. And why he had to die so quickly. And that she felt completely lost without him. I held her tight, tears running down my cheeks, and said, “I know. I know.”

The Joy of Not Being Needed

On Sunday afternoon, my phone rang. It was Mom. “What time is it right now where you live?”

I looked at my watch. “4:04 pm.”

“What time is it right now where I live?” For a split second, I thought about this. Could there, would there, be any chance that time where she is could be slightly more in the future than where I am? She’s north of me by about three miles. I told her, “It’s 4:04 pm where you are, too.”

She sighed. “Okay. The clocks don’t work. They all say zero.”

I knew what had happened. She had pressed the “clock” button on the microwave instead of “start.” It had reset to 0:00.

“Would you like me to come and reset your clock now?”

“No. It’s fine. Just reset it the next time you’re here.”

“Maybe you could have Gloria (caretaker) reset it tomorrow when she’s there with you.”

“I’ll do that. Gloria can do anything.”

*******************

This afternoon, my phone rang. It was Mom. “What time is it right now where you live?”

“It’s 4:54 pm. What time does your clock say?”

“It says 0. I don’t know what time it is.”

“I have a work call in a few minutes and then I’ll come over and reset your clock.”

********************

I arrive to Mom’s apartment about 6:30 pm. I let myself in and loudly announced I was there. She appeared from around the corner and said, “Why are you here?”

“I’m here to reset your clock.” 

I reset it, and wrote the directions for how to reset it on a post-it note so that if Mom accidentally reset it to 0:00, Gloria would know how to program it.

I hugged her tightly, told her I loved her, and she told me I could go. I put my coat back on and asked if she was going to attend the 7 pm movie. She nodded and said she’d walk me downstairs. When we got to the lobby, she shooed me off and started talking to her friends, also going to the movie.

I wondered if this was how she felt when I was a teenager and immediately pretended not to know her as soon as she dropped me off anywhere. I smiled, glad that she didn’t need me, glad to see her so social with others in her home.

Gratitude When It’s Not Expected

I’m grateful for the way Alzheimer’s is affecting my mom’s brain.

I attended a Moth Story Slam last night here in Asheville. I love these events. Hearing people tell stories. Being in the presence of vulnerability. Feeling the support of the community as people reveal their joy, their sadness, their fears.

The theme this month was “Gratitude.” I thought about preparing a story to share, and then sitting with mom for four hours after a run in with the dining hall manager, spending two hours at the bank dealing with dad’s estate, and writing thank you notes took precedence and the story was never practiced, though it resided in my thoughts.

A few weeks ago, I heard some women my mom’s age talk about their “eggshell daughters.” I had never heard this term and asked, “What’s that mean?” They explained that though they loved their daughters tremendously, they felt like they always had to walk on eggshells around them – the tiniest thing would start an incident.

“Hm,” I thought. I wondered if my mom considered me an eggshell daughter. It wouldn’t surprise me.

See, we clashed for a considerable amount of years from when I was a tween to when I was a grown adult. I never felt approval from her. I would bring home an “A” on a paper, and she’d ask me why wasn’t it an “A+”? When I quit my NC teaching job to move to CA (with no job in hand) she told me I was making the biggest mistake of my life, and why would I ever give up a steady job with benefits, and I would be on the streets for sure and she wouldn’t be there to help me. When I divorced, she told me that I would never, ever find someone as good as him (she really liked my first husband).

I loved my mom deeply, and it was so incredibly hard to be around her sometimes. Many times.

And now, it’s not.

I hate that my mom has Alzheimer’s. It’s a devastating disease. Moment by moment you watch as a loved one’s brain dies. I would never wish this disease on anyone.

And, I love spending time with my mom now. She doesn’t remember to be acerbic. She doesn’t remember to criticize. She doesn’t hold grudges, and we live every day in the moment. We have fun together. We go to events, and art galleries, and sit on the porch and rock, and cry, and remember dad. We tell each other, “I love you” often and openly.

Yes, we have the same conversation multiple times in an evening. Tonight she asked me seventeen times what tomorrow was and did we have any plans. And seventeen times I happily told her that tomorrow was Saturday, we didn’t have anything planned, but if she wanted to do something, she could push the button on her phone that direct dials me and we would do it. And on Sunday we would go to a neighbor’s art show.

And it doesn’t bother me. I honestly can approach every question as if it is the first time she is asking, because there is no negativity anymore, and I’m so grateful for that.

And, yes, I’ve spent several therapy sessions over the guilt that I feel because I’m so happy with our relationship now, and I don’t know that it would have ever been possible without her succumbing to this terrible disease.

I’m so incredibly grateful that my most recent memories of my mom are moments of joy, and laughter, and lightness, and love. I’ve heard stories of how people’s personalities change when they have Alzheimer’s, and mostly it’s going from being really kind and sweet to being really mean and nasty people. And even though fifty years were difficult with a mom who was critical and withheld affection, the past six months have completely changed my perception of my mom, and I’m so thankful to share this bond with her, even though it’s a result of her brain dying. And that is what I think of when I think of gratitude.

An Unexpected Gift

Sunday was the HardLox festival in Asheville, the Jewish Food & Heritage Festival. I wanted to go simply because I admired the wittiness of the name. I asked Mom if she would like to go with me. “Sure!” she said, which is the answer she gives when she isn’t sure what I’m asking.

We arrived and wandered in and out of the booths, looking at handcrafted jewelry and tasting treats for Sukkot. As we were walking, the Beth HaTephila Kol Simcha Choir started performing. Mom asked to walk to the front of the stage. We stood there, listening to various songs and hymns in Hebrew and English. I was mesmerized by the conductor, obviously finding joy in this performance, adoration radiating from her entire body. I watched each of the individual members, also joyful, singing whole heartedly and without abandon. I glanced over at Mom, and she was mouthing the words as well. I glanced over again. We’re not Jewish. We didn’t grow up singing the songs of Israel. But here was Mom, whose Alzheimer’s makes her struggle with everyday language, and remembering words, and comprehending language, singing along with the chorus of songs she had never heard before, deeply engaged. I was silently grateful.

The music ended and we decided to get something to eat. I thoroughly enjoyed my kosher hot dog and mom picked at her bagel. I asked her if she’d like to stay longer or head home. She stared at me blankly. “Let’s go see who the next performers are, and then we’ll make our decision,” I suggested.

We sat on the curb in front of the stage as the Bandana Klezmer band tuned their instruments: accordion, fiddle, guitar, cello, harmonica. They played their first song and Mom said she’d like to stay. We tapped our feet and clapped our hands. After the second or third song, the band mentioned that there was a wide area in front of the stage, and their songs were perfect for dancing. I turned to Mom and jokingly said, “Do you want to dance?” “Sure!” she said, and handed me her purse. The next several minutes were a gift I could not have expected. She laughed heartily as she joined the circle of women and children dancing. She followed along with steps, raised her arms, and clapped. As each song ended, she looked for me with a panic-stricken expression, and I got her attention and motioned for her to continue dancing. After a few songs, she came and pulled me into the circle as well. We joined hands, danced to the right and to the left, waved our arms, and laughed together. Having witnessed so many things that she can’t do these days, this was a wonderful gift of what she can do, and can do with gusto, and love, and joy.

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Dancing to Bandana Klezmer

Being the Change

I had heard of the NC Western Gala but had never been in town when it took place. I returned home on Friday from a work trip and skimmed through emails from the week. I noticed the Gala was on Saturday evening and took a moment to think about whether I had the energy to attend or not. I was tired, really, really tired. The past few months were catching up with me. And, this was important. One of the things that influenced my decision to move back to North Carolina was because I felt my voice, my contributions, my volunteerism, would have more impact here than in California. I decided to sleep on it.

On Saturday morning I received a text from my friend from college days, Justice Mark Davis, saying he was in town and could we catch up for coffee or a late lunch. I texted back an enthusiastic “yes!” because surprise get togethers are one of my favorite things in the whole world. And then I asked if by chance he was in town for the Western Gala. He was, and that tipped my decision to attend.

Over a delicious late lunch at Haywood Common we updated each other on family, on travels, on work, the talk that comes easily with good friends who you haven’t seen in a while. He mentioned he was recently in Winston-Salem attending shabbat services, and Rabbi Mark shared my father’s name as someone recently departed. The bittersweet feelings of happiness, pride, and sadness swept over me all at once. Gosh, I miss Dad. I miss being able to talk to him about work, about travels, about interesting articles I’ve read, about something I’ve seen that I know he’d be interested in. I miss telling jokes with and hearing jokes from him. I miss his ever present smile and gentle nature. I miss theological discussions with him, wondering what comes next, if there is a next. I miss discussing politics with him, and what the future of our nation is. I miss having us attend the Western Gala together.

The Gala was more fun than I expected. I met candidates running for local, state, and national offices, and chatted with them about where they stood on various issues. I had great conversations with new folks about what they felt were priorities for the state. I came away from the evening with such respect for those willing to run for office.

<shameless plug> If you are in North Carolina or not, I encourage you to support two candidates in particular, Justice Mark A Davis, the first Jewish American judge (ever!) on the NC Supreme Court (it took 200 years) and a dear friend, and Chief Justice Cheri Beasley, the first African American woman Chief Justice on the NC Supreme Court (ever!). One of the things I love about both of them is that they are real people – they’re easy to talk to and insatiably curious. They love North Carolina and the people who live here. They are dedicated to upholding the law and place that as a priority over party politics. I came away from the evening excited about the upcoming months and vowing to encourage everyone I know to vote or volunteer or contribute. </shameless plug>

How Does Your Garden Grow?

One of the things I was most excited about when I moved into this house two years ago was planting a garden. Home-grown tomatoes! Herbs! Okra and zucchini! And other delicious garden delicacies!

The first year passed, and the garden didn’t get planted. There was travel, a family of raccoons nesting in my chimney, and the never ending struggle of pulling weeds on my front bank.

I didn’t want to let another summer go by without the prospect of a garden. So, in December of last year, I had someone help landscape the yard with native shrubs and flowers (which I naïvely thought meant I would not have any more weeds to pull…) and build a raised planter. There weren’t many ideal places to build the planter bed. I wanted the front yard to be flowers and plants, something new blooming all year round, a surprise each day I left my house, a haven for butterflies and bumblebees. The back yard is way too shady, but a paradise for hostras and ferns and moss. And the side yard has a bit of space that is ideal for a garden. So one bed was installed in December and I dreamed of the day I would be able to plant.

And then I moved to Winston-Salem to care for Dad and Mom and when I moved back to Asheville in June, the planting season was over. Or was it? They were still selling seeds at the hardware store. So I planted tomato plants around the perimeter. And rows of kale, radishes, and okra. For days, I watered a bed of dirt. I wondered if anything would grow. I left on a work trip, came back, and there were sprouts. Sprouts!

I patiently fertilized and watered and tended each day. I noticed tender young kale leaves when I watered on Friday. I dreamed of the salad I would have. I went out on Sunday morning to pick the kale. And was met by what appeared to be blades of grass. Something had eaten the kale completely down to the stalk. Every single leaf of kale was gone. All of them. I would not have recognized the plants as kale had I not planted them myself. What could have done this? It could have been our neighborhood bear (but if it was, he or she was mighty careful). It could have been the neighborhood rabbits. Or wild turkeys. Or deer (I haven’t actually seen deer in our neighborhood, but I’m guessing they could be here). Raccoons? Maybe. I was glad that it provided a meal to something. And that they didn’t bother the tomatoes, radishes, or okra. Yet. 🙂

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