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

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>

The Magic of the Cape

A while ago, a dear friend sent me a postcard from Cape Cod. And happened to mention that I should come visit on a future date when she’s there with her family. And I thought, “Yes!”

And then this year came, which has simply been hard. And she reached out and acknowledged it’s been a hard year, and wouldn’t I like to join her family in September on the Cape? She warned me that they were spectacular loafers. And I thought, “Yes!”

And I booked my tickets for a long weekend, and dreamed of lobster rolls.

And then got news that the company that I work for, Automattic, would be closing on the acquisition of Tumblr the exact dates that I planned to be on the Cape. And I thought, “Noooooo….”

I pondered. Should I cancel the trip? I talked to a colleague and she suggested that our work would be done well before closing (and in a perfect world it would have been). I thought about it some more and decided to go to the Cape and work from there as needed.

And there were things to be done, right up until the minute we closed. And I sat wrapped in my hoodie on the porch with a cool Cape breeze blowing and sent offer letters. And reviewed immigration cases. And responded to emails. And reminded myself that we get one shot at this life and I was on the Cape with a dear friend and her lovely family and jigsaw puzzles and lobster rolls and people who loafed like it was their job and their laid back attitude permeated the very air surrounding us. And each day before opening my computer I took the time to say good morning, and chit chat, and add a few pieces to the jigsaw puzzle, and dream about lobster rolls for lunch. And it might have been my most perfect vacation yet.

 

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

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

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.

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.”