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.”

RBG.jpeg

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.

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.

NEW YEAR'S DAY LUNCH.jpeg

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.

81E19409-0650-4E40-8CEE-D6A82768BC37_1_105_c.jpeg

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”

28BF3A72-C711-4535-A81A-BFACD8A527D2_1_105_c.jpeg

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”

B9870212-18F7-45C1-8D4D-DD018AFC8F09_1_105_c.jpeg

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.

The Final Visit

I sat on the floor, back against the wall, where his bed had been, where he had lain for months, where every night we had gone through the sterilization process for dialysis, and I sobbed. The memories were so strong. This is where he fought, where he tried to best the disease that would kill him. That final day is etched in my mind. I came in to say goodbye before getting on the road, and he was writhing in pain. When he attempted to answer my questions about what hurt, he grimaced. When I touched him, he recoiled in agony.

The memories are so strong when I return to Winston-Salem. And this will likely be my last return.

We thought about keeping their condo, about renting it out. And I talked to a couple of folks who might have been interested, but the price wasn’t right, the timing wasn’t right. Mom keeps saying that she never wants to return to Winston-Salem, that there are too many bad memories. The idea of running a third household in addition to mine and Mom’s was more than I could consider.

I put the condo on the market and two days later had an offer. I should be happy. I should be thrilled. We got a great offer and this will be another chapter behind us.

And as I moved from room to room, cleaning out closets and wrapping pictures in bubble wrap and towels, I  stopped and sat on the floor and just cried. Cried because I miss my Dad so much. I miss his wisdom and his guidance. I wish he were here to help ease Mom’s sadness. I wish he were here to share happy moments. I just wish he were here. How is it possible to miss someone so much to the point where your heart physically hurts?

I take pictures off the wall that we bought together when we traveled in China, in Korea, in other places around the world. I take pictures off the wall that had been in our house in Rural Hall, where I lived from 5 years old to adulthood. I wondered where these would go. My walls were full. Mom’s walls were full. My siblings’ walls were full. I wrapped them in sheets and placed them in my car, prolonging the decision until later.

I walked out on the balcony. The sun was setting and the sky was turning from pink to orange to blue to violet. My favorite time of day. My favorite place to be. When I lived with Mom and Dad earlier this year, I would bundle up and sit in the rocker as the sun went down and just be. Not think about work, or what I needed to do, or Dad’s medical prognosis, or Mom’s recent cognitive assessment. I watched the sun set for the last time from this vantage point. And I cried some more.

 

final Winston-Salem sunset.JPG

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.

HardLox.jpg

Dancing to Bandana Klezmer

Happy Birthday, Dad

Facebook reminded me this morning that it is Dad’s birthday. As if I could forget. I woke up, ready to FaceTime him and sing a very poor rendition of The Beatles’ Birthday song, as I’ve done every year for the past, oh, who knows? how many years. And have him listen patiently and laugh at me.

I cried a few (okay, a lot of) tears, wishing that we had just one more celebration together. One more chance to tell him how much I loved him and how grateful I am that he’s my Dad. But I guess that’s how every milestone will be from here on out. Wishing that Dad were still here, wishing I could tell him one more thing.

This was the last picture we took together. It was on January 21st of this year and it was our “Hooray! We’re being discharged from the hospital for the last time!” selfie. Except that it wasn’t. We were in the hospital many more times after that. And we always thought there would be more opportunities to take pictures.

Last selfie.JPG

So Many Tears

I don’t know why this weekend was the weekend of tears, but it was. It’s not an anniversary. Or a birthday. Or a special date of any sort.

Friday Evening
“Can you come over? I need to talk to you about something important,” Mom said. Talking on the phone can be confusing for her, so I got in the car and headed over.

“I just don’t like it here. I don’t belong here. I can’t sit in my room all day. Can I get a job?”

I put my arms around her and said, “That sounds hard. Tell me more.”

“All they do is complain. At dinner tonight the little old ladies were complaining about the food. The food is fine here. Why are they always complaining?”

I found this ironic, given that growing up my most vivid memories of my mom involved her complaining. About everything.

“What would you like to do?” I asked. “I don’t know; I just, I just can’t sit here.” The tears streamed down her face. I held her and tried to hide my tears. This isn’t how it was supposed to be.

I pulled out my computer and started looking for volunteer opportunities. Mom peeked over my shoulder. As I read each one out loud, she said, “no,” “no,” “no,” “no.”

Was this one of the things that she would forget about? How seriously did I need to take her inquiry? Would she remember tomorrow?

“Mom, the arboretum is open for another couple of hours. Let’s go for a walk.”

We walked through the empty grounds; no one else was there on a Friday night at 8:00 pm. We sat on benches and listened to fountains. We walked down mulched paths and watched fireflies light up. We read signs about NC native flora and fauna. We watched a hummingbird go from plant to plant to plant.

On the way home, I asked if she’d like to get ice cream. “Sure!” which has become her default answer to almost all questions. We sat outside in the heat, which was slowly becoming cool, eating the rapidly melting sweet cream.

Saturday
I tried to meditate Saturday morning. I sat for about three minutes before the tears came. I tried to focus on my breath, and all I could do was sob. That would be my practice for the day. Tears.

Later in the day, after running errands, I decided to get my car washed. As I sat on the bench, waiting for them to finish vacuuming, I stared into the distance. Across the street was Range Urgent Care. Where we took Dad at Christmas 2017 when his legs were swollen and he was having trouble breathing. Where they told us to go to the ER right away and I had to ask, “Where is the ER?” being so new to town. I sat there, dark sunglasses on, hot tears streaming down my face in the warm afternoon.

Sunday
I weeded the yard, much too late in the morning. Fearing heatstroke, I came inside, poured myself a tall glass of iced tea, and started reading. “How to Go on Living When Someone You Love Dies” had been recommended to me. Two pages in, and I started crying. I put the book down. I sobbed for what could have been minutes, but was actually hours.

I called Mom. “Would you like to go downtown with me?” “Sure!” “Okay. I’ll be there in about 30 minutes. Don’t go anywhere.” This last sentence was necessary because when I went to get her last week, I wasn’t in the lobby when she thought I should have been, and she just started walking. Fortunately, the concierge noticed, and called me. When I found her, I laughed it off, saying, “Oh, did you decide to go to lunch without me?” but inside I was terrified that this was a new stage – wandering.

I couldn’t put on makeup because my face and eyes were too swollen. I hoped that sunglasses would hide the redness and puffiness. She was in her apartment when I arrived. We walked around downtown, disappointed that so many stores were closed on Sunday. We stopped by Harris Teeter to buy ice cream. I put one half gallon in the buggy and she said, “More.” I put another half gallon in the buggy and she said, “More.” “Mom,” I said. “More,” she countered. I put another half gallon in the buggy and started walking away.

We got back to her apartment and put the groceries away. “Where are those books that talked about when Daddy and I travelled?” I looked in her bedroom and found the photo album labeled “Volume 2 – Thailand, Turkey, Italy, and France.” We turned through each page, looking at faded photographs and receipts and postcards and souvenirs Dad had pasted in the photo album. As we neared the end, I said, “That really was a great trip you took.” And the tears rolled down her face. “I miss him so much. I love him so much. It’s not supposed to be like this.”

I hugged her. “I know. I know. I know.”