A Year Later

Now isn’t so different from this time last year.

We had masks by the front door, which visitors had to wear if they wanted to come in, and Dad had to wear on the rare occasions he went out. I had gloves that I donned whenever I helped Dad with his dialysis. I washed my hands every day until they were chapped. The smell of antimicrobial liquid soap still makes me gag. Dad was going through chemotherapy and we were doing everything we could to protect him.

And now is so completely different from this time last year.

Now we’re not protecting one person; we’re protecting all people.

And I still grieve for Dad. Last year, I told myself that I was making decisions so that I wouldn’t have any regrets. I moved in with Mom and Dad. We talked. We did NY Times Minis together. We played Scrabble together. We solved jigsaws together. We planned renal diet friendly menus together. We talked some more.

Is it regrets I have? Or is it simply longing? Wishing I could have one more conversation with him. Wishing we could have one more hug before bedtime. Wishing we could reminisce about each of our childhoods.

It sounds so strange to say, but one of my favorite memories from last year is when we were waiting in the Emergency Department for his treatment. It was just the two of us. We talked about him trying out for the AAA baseball league. He had been a successful high school pitcher and was invited to tryouts. He confidently approached the day and said he left barely being able to move. We talked about his career as a sports writer. And how he built the cabin in the mountains. And the afterlife. And Cherie Berry (NC elevator queen) announcing that she wouldn’t run for re-election. I asked him why he changed his mind about letting my try out for Little League (in the first year girls were allowed to play, 1974). He said that when we approached the sign up table, he saw there were no other girls, and how the organizers sneered at me. He didn’t want to subject me to that at six years old. We talked as we waited for almost eight hours.

It was a small room. With fluorescent lights and the smell of disinfectant and a flimsy curtain masquerading as a wall. I pulled a chair close to his hospital bed and held his hand as we talked, and talked, and talked. I was sad when they shared he would be transferred to ICU. I didn’t want the night to end. They said I couldn’t see him until they got him settled. So I waited in the ICU waiting room, across from the Pepsi vending machine, wondering how there could be so many flavors of Mountain Dew.

I’m hoping now I’m living so that I won’t have regrets.

Jazz and Taxes

I have been known to procrastinate. One of my first jobs was as a writer for the local newspaper and there was a thrill of turning something great in, right at the deadline. There is one major exception to my habit of procrastination. Taxes. I relish filing my taxes as soon as possible. I sat down this weekend, determined to have all the requisite paperwork to the accountants by Monday. This year, however, I had two sets of taxes to prepare. Mine, and my parents’. I probably should have done mine first. But for some reason, I didn’t.

As I worked through the organizer my Dad’s accountant sent me, questions stabbed me.

“Change in marital status?” Yes, J deceased in April 2019; S widowed in April 2019.

“Sale of residence?” Yes, after my Mom could no longer live on her own.

“Medical receipts?” So. Many. Medical. Receipts. As I organized them by month, the painful memory of each individual receipt overwhelmed me. Trips to the Emergency Department. Prescriptions in the hospital pharmacy. Waiting at the cancer center pharmacy. Trip after trip after trip to the local CVS, filling prescriptions for drugs that didn’t work.

I couldn’t breathe. I was back in 2019, back hoping that each proposed treatment would allow Dad to continue to live the life he wanted to. Not aware that he would leave us so soon. Gullible and believing him when he said that he would get better. And then I was sad. So incredibly sad that he wasn’t able to live the life he wanted to for as long as he wanted to. That he’s no longer here.

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

A friend invited me to join her for a special Fat Tuesday dinner tonight. The restaurant was serving special New Orleans cuisine and a jazz band played throughout dinner. Gold, green, and purple beads hung from the fixtures. She talked about going to New Orleans with her brother, and how he went to bed so early and they didn’t get to experience the late night jazz New Orleans is famous for. And just like that, I was overwhelmed with memories of my first trip to New Orleans.

I had just graduated from college and Dad said we should take a trip, just the two of us. I suggested New Orleans, and he booked everything. We saw all the historical sites during the day, and at night we ate great food and listened to so. much. music. I’d suggest going to one more bar to hear one more band, and he was always up for it. Our agreement was we could stay out as late as I wanted, but we had to be up at 8 am (ouch) the next morning to tackle the historical sites.

As I listened to the band tonight, I know that I’m forgetting parts of the trip. I so desperately want to remember every detail. When I returned home, I pulled out a box of pictures from that time (back when we still printed pictures from a roll of film at the local drug store) and looked for a picture of us from that trip. I couldn’t find any of us together. There were pictures he took of me, and pictures I took of him, but we hadn’t had the foresight to ask someone to take one of us together. And then I was sad again.

 

 

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.”

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.

 

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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>

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.”

Father’s Day

In hindsight, it really was a bad decision. And honestly, had I given it any thought at all, I probably could have figured out it would be a bad decision in advance. These days, though, I’m more or less on auto-pilot, simply trying to get through each day with a semblance of normalcy.

There were a few things Mom wanted from her condo in Winston-Salem. I knew I would be passing through there this weekend, on my way to/from Raleigh en route to a bat mitzvah. Traffic on Friday was heavy, and I was concerned that if I stopped, I wouldn’t make it to Raleigh in time for the Shabbat service.

So this morning I planned to stop there on the way home to Asheville. It would break up the trip, I could get the things Mom wanted, and I could start packing up Dad’s study, which we hadn’t had time to do before we moved Mom.

You probably already see why this might be a bad idea to do on the first Father’s Day after Dad’s death. Unfortunately, I was focusing on how practical it would be for me to pick up the things while already on another trip, instead of making a special trip there.

When I pulled up to the condo garage, the tears started flowing. Ever the practical one, I thought, “I’ll spend a hour here, say hello to the neighbors, and get back on the road.”

I wasn’t prepared for the punch-in-the-gut feeling when I opened the condo door, and walked into an almost empty unit. I wasn’t prepared for all the memories of the last few months to come flooding back all at once. I closed the door, leaned up against the wall, and allowed myself to cry, to sob, to remember, to grieve. I slunk down the wall and sat curled up on the floor, simply crying, missing Dad, missing our life within these four walls. Missing experimenting with cooking low-sodium, low-potassium meals for Dad. Missing scrubbing up and preparing a sterile environment to change his bandages. Missing turning on the gas fireplace, even when it was warm outside, because Dad was always cold. Missing the one spot in the kitchen where we hugged goodnight every night and said “I love yous.”

After I thought the tears were done (note, the tears are never done), thinking I was okay to do what I had come to do, I rose up, and walked into Mom and Dad’s bedroom to get something from their closet. Again, that feeling. Of not being prepared for the wave of grief. Instead of an empty room, I saw Dad, curled up in the bed in excruciating pain, that Thursday morning that I called 911 and requested an ambulance. I remember the utter helplessness, of seeing him in pain and not being able to help. Of watching the paramedics lift him onto the stretcher and pleading with them to be careful.

I sat in the one chair that was left there, and just allowed myself to cry. And cry. And cry. I felt my Dad’s spirit in the house. Or maybe I imagined it. Or maybe I wanted it so badly I believed it. And I realized that grief is not going to allow me to be practical. I’m on its schedule now.