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.

HardLox.jpg

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. 🙂

Kale, stripped.JPG

A Garden Hose, For Gosh Sake

I love my local Ace Hardware store. Almost everyone who works there is so friendly, and helpful, and just a delight to interact with. One of the cashiers is a master of puns. I always try to get her line so we can banter back and forth as I’m checking out.

I needed a garden hose. I walked to the appropriate aisle, overwhelmed by the number of garden hoses available. I pulled out my phone, started scrolling through numbers, and then stopped.

Dad wouldn’t answer my call.

Almost every trip to Ace Hardware had also involved a call to Dad, my personal advisor on all things home fix-it. “If I’m cutting a decorative steel plank to cover the gap between the stove and the wall, what’s the best hacksaw to buy?” “There’s a mouse in the house – what extermination methods would you recommend?” “I’m painting my office – is it really necessary to prime the walls first?”

And he patiently walked me through each option, then gave me a recommendation. “Thanks, Dad! Your check’s in the mail!” I’d joke as we hung up.

I was staring at garden hoses. I had no idea which one to buy. I’ve never bought a garden hose before. Why were there so many options?

An Ace Hardware employee walked down the aisle. “Do you need help with anything?”

I took this as a sign my Dad had sent help. He couldn’t be there, but he could send a proxy. “I’m looking for a garden hose.” He didn’t even slow down. “They’re right there,” he said as he continued walking.

I stared at him in disbelief. Like I said, almost *all* employees are so friendly and so helpful, and go out of their way to walk you through options. Dad had not sent help. Or, if he had, he needed more practice.

An hour later, I had bought a garden hose, a nozzle, and a stand to wind the garden hose on for “convenient, easy storage.” Lies. I hooked the garden hose to the storage unit and started turning the handle, which was meant to easily wind the hose into a perfect coil. It simply knotted it up. After a half hour of struggling with the hose, I attached the nozzle and began watering the plants. Or, attempted to. Several of the connections were not tight enough and water sprayed everywhere – in my shoes, in my face, on my pants. I attempted to fix it without turning off the water. Turning the threads the wrong way, more water sprayed me. It was too much. What I once would have thought of as comical, laughing hysterically, I simply couldn’t take. I sat down on the edge of the raised garden bed that has housed nothing but weeds this year and just cried, as I became wetter and wetter.

Later, cried out and dried off, I attempted to read a few more pages in “How to Go On Living When Someone You Love Dies.” I came to a section on “The Work of Grief.”

However, grief is not commonly perceived as work. …Grief can deplete you to such an extent that the slightest tasks become monumental, and what previously was easily achievable now may seem insurmountable. page 16

I can’t even figure out how to use a garden hose. This is what grief looks like.

Unexpected Joy

And then there are moments which I could have never planned, which made them all the more incredible.

One of my dear friends from high school, who was also my roommate freshman year at UNC, who I lost touch with probably 25 years ago, messaged me through Facebook shortly before 5 pm. She was in Asheville visiting her mom, and would I like to join them? Without hesitation, I asked where they were and said I could be there in 20 minutes.

As I drove there, I wondered, “Would this be awkward?” “Would we have things to talk about?” “Why had we lost contact 25 years ago?”

And as soon as I saw her, and hugged her, and her family, it was if we were all back in time. So many laughs and memories, and stories to catch up on. What she had done. What I had done. How she ended up where she was. How I had. Changes. After a bit, I left to visit Mom, as I had promised her I would. I left feeling lighter, feeling joy, feeling loved, and feeling seen. What an incredible gift.

(Note: I took a selfie of us, which was so incredibly blurred it’s embarrassing, so I’m including a picture of some glittery Bulgarian artwork instead, which also brings unexpected joy.)

And there was a cupcake

June 11, 2019

Before he passed, my Dad put our family cabin on the market. It closed last week and I received the check on Monday. Since it was a rather large amount, I went into the bank to deposit it into my Mom’s account on Tuesday.

The teller was quite chatty, and the transaction took a long time, and she had to have someone else approve the deposit, and at some point I started crying quietly. I haven’t been able to enter a bank without crying since Dad’s death. I’m not sure what the trigger is, and I thought perhaps this day would be different, but it wasn’t. I mumbled, “I’m so sorry. My father recently passed away and dealing with paperwork is difficult.”

She excitingly said, “Oh, tomorrow is your birthday! Happy birthday!” I smiled wanly and thanked her. “Are you doing anything extraordinary and special?” And what went through my mind was, “I’ll be celebrating without my biggest supporter, my Dad.” Last year’s birthday was extraordinary and special – so many of my friends came to Asheville to celebrate 50 turns around the sun. And Dad loved it. He always loved interacting with my friends and was always so charming. He reminded me of how lucky I was to have such strong friendships.

Instead, what I said was, “No, not really” and tried not to sob loudly, the tears running more quickly down my cheeks, annoyingly hot in the air-conditioned bank.

“Would you go out and get a cupcake? And maybe put a candle on it?” she asked.

“Maybe,” was all I could muster as I received the deposit slip and walked out of the bank into the hot, hot summer day.

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

June 12, 2019

Mom and I went to a friend’s house for dinner. It was the happiest I’ve seen her since she moved to Asheville. She had a glass of wine, she ate a full meal, and she accepted a piece of cake to take home. It was the most perfect birthday present I could ask for.

I took her home, we sat on her balcony, we watched the sun set behind the Blue Ridge Mountains, and then I returned home.

As I walked onto my porch, I noticed a cupcake, right there on one of the chairs, next to the mailbox. It was beautiful. A chocolate cupcake with chocolate frosting, so perfectly swirled, with two blueberries and one raspberry on top, with decorative papers, and enclosed in a plastic clam shell.

“A cupcake!” I thought, and brought it inside.

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

June 13, 2019

I had back to back meetings all day and didn’t stop for meals. Around 1:30 pm, I was hungry. I saw the cupcake on the counter and took a bite. The icing, so smooth, so just a hint of raspberry deliciousness, perfectly complemented the moist chocolate cake.

I ate the whole thing.

During the last bite, I had a thought. “I just ate a cupcake and I have no idea where it came from or who left it on my porch. I’ve become that person who just trusts people leaving food on her porch.”

And I think I’m okay with that.

And if whoever left the cupcake is reading this, thank you for the second most perfect birthday gift you could have given me.

Note: image is not the actual cupcake. I ate the whole darn thing before I even considered taking a photo.

Changes

And just like that, everything changed.

“Who picked this place?”
“I did, Mom.”
“Did you look at other places?”
“I did.” (honestly not prepared for what might come next)

“You couldn’t have picked a better place for me. I’m so happy here.”

I stared at her, not sure quite how to react.

I finally said, “I’m so glad that you’re happy here.”

And we sat in silence, looking at the mountains.

Me, too.

“Mom”

That’s what caller ID shows when Mom calls me. Our conversations are as short as the caller ID.

“Hi, Lori. It’s Mom. I don’t remember why I called. Bye.”
“Hi, Lori. It’s Mom. I don’t want people cleaning my apartment. Make them stop.”
“Hi, Lori. It’s Mom. Where is the blue material? I want to make cushions.”

I usually don’t have time to respond before she hangs up on me, my “I love you” disappearing into a dial tone. It’s like she simply has to get the idea out into the universe. I jot notes on scrap pieces of paper and follow up when I’m there in person.

Today I received this call.
“Hi, Lori. It’s Mom. There’s a birthday list here and we need to write cards. Please come over.”

Before she hung up, I told her I’d come after dinner.

Mom likes to send birthday cards. She always has. I arrived, reminded her she wanted to send birthday cards, and got the Ziploc bag labeled “birthday cards” from her closet, a pen, and a pad to practice on. She said, “Now whose birthday is it?” I walked her to the bulletin board where earlier in the year Dad had made her a cheat sheet of family and friend birthdays by month. I read the June birthdays: a grandson, me, a family friend, and a granddaughter-in-law.

There were no July birthdays listed.

We both saw it at the same time. Dad’s birthday. August 15. She started crying and I followed a mere milli-second later, hugging her tightly. “I miss him so much,” we said in unison, crying, then crying some more, which then turned into sobbing, a mother and a daughter missing the same man, more than either ever thought possible.

After a few minutes and several Kleenex later, we sat on the balcony, watching the sun set. I love the Blue Ridge mountains, shadowing each other, deeper and darker versions of blue layered upon each other. As the sun set farther, the outline of the mountains became darker, more pronounced. We sat in our rocking chairs, holding hands, rocking in unison, side by side.

“This is my favorite time of day.”

I nodded. “Mine, too.”

“I really like it here.”

I didn’t want to break the spell by asking her to repeat herself, in case I had mis-heard.

I nodded. “Me, too.”