A Little Bit of Heartbreak

It’s weird when the people that birthed you no longer exist.

Dad passed away last year. Mom still remembered my birthday last year, but this year had no idea.

A dear friend gave me a mini birthday cake. Even a mini cake was too much for me to eat on my own, so I cut a slice and then boxed up the rest to take to Mom and her caregiver. I passed the cake off at a distance, in the breezeway area outside of Mom’s facility (still no visitors allowed inside). Mom looked in the bag and exclaimed, “Is it my birthday?” I laughed and said, “No, Mom.” She asked, “Well, why the cake?” I told her it was my birthday and she said, “Really????” Yes, I told her with a smile.

I had many calls, texts, emails, and video calls from friends today. I am so appreciative and so grateful of the outpouring of love and friendship. And yet, the people that were there when I was born are no more. It’s part of growing older, it’s the cycle of life, and it’s also so very heartbreaking.

“Why Are They Killing The Black People?”

“Why are they killing the Black people?”

Over the past weeks, I had felt Mom becoming more and more distant. Her eyes were glassy and conversations often didn’t make sense. This was lucid.

“I… I don’t know, Mom. We live in a racist society. I don’t know why they’re killing them.”

“They didn’t do anything wrong. Why are they killing them?”

I could hear CNN, or maybe MSNBC, blasting in the background. I heard Mom start to cry. “I just don’t understand.”

“Mom, why don’t you turn the tv off. Would you like to go for a walk and talk?”

“I need to be alone. I don’t understand.”

How is it that I’m having this conversation with my Mom, 78, with advanced Alzheimer’s, about the insanity of what is happening in our country right now? How do I answer the question that she’s asked? Why are we killing Black people? What do we have to do to stop the killing? To stop the hatred, the rage, the prejudice, the racism, behind the killing?

I cried for the rest of the day. I’m not shocked by what is happening. We are a racist society, in which many people (me included) benefit from that racism, and I’m tired of it. We have got to dismantle the systems that allow this to continue.

My friend Michelle put together this list of resources, Racial Justice, A List of Resources for White People Who Are Not on Twitter 24 Hours a Day. I’m donating, I’m writing, I’m speaking out. I have no delusions that it’s enough.

New Life, Gone

On Saturday morning, I went to the porch to sweep it off and to set out the basket of granola bars and packets of nuts for delivery folks. The little wren flew out of her nest when I opened the door, and I quickly did what I needed to do, then went inside and closed the door. I stood out of site and waited the two minutes that it normally takes her to return to the nest. Sure enough, she did, and I watched as she nestled into her home, hidden from site once again. I felt so lucky that she had chosen to build her nest there and that I was witness to it.

Around noon, I peeked out the door to see if the mail had come. I noticed something on the table below the nest. What was that?

I slowly opened the door, and moved closer. No. NO. NO!

Two cracked eggs were on the table below the nest, yolks spreading across the table laden with pollen. I stood on a chair and peeked inside the nest. All the eggs were gone. The little wren was nowhere to be seen or heard.

I held out a glimmer of hope that the chicks had hatched, and miraculously left the nest already. A quick Google search confirmed that was impossible and the most likely culprit was a predator – a blue jay, a snake, a raccoon, honestly, any critter.

The tears began streaming down my face as I cleaned up the mess. I went inside and continued crying. The tears were for the mother wren. But also for the loss of hope. And for the loss of what used to be normalcy. And for all the other times that I had felt like crying, but hadn’t.

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A Letter to Dad

Today marks one year since Dad passed away. In some ways, it feels like yesterday that we were in the ICU, holding his hand, talking to him and praying as he was taken off life support. And in other ways, it feels like a lifetime ago. There have been so many moments this year that I’ve wanted to talk to him, or tell him “I love you,” or seek his advice, or give him a hug. For fifty years he was my biggest cheerleader, my rock, my support.

I predicted today might be emotional (and yes, there were many tears) so I took the day off work. Months ago, my grief counselor recommended I think about how I wanted to spend the day. What I wanted to do was spend the whole day on the mountain, wandering in the woods, then having a nice dinner with Mom and we could share our favorite memories. And maybe that will happen next year. When shelter in place orders were given, I thought, “Well, I anticipate I’ll be pretty teary, I might as well spend the day unpacking some of the boxes I haven’t gotten around to and going through all the files.” (Note: In hindsight, this wasn’t really the best way to spend the day.)

For the year since his death, I’ve been plagued with nightmares that I didn’t tell him everything I needed to. Did he know how much I loved him? Did he realize how much his guidance had influenced me? Did he know how much I respected him? I know that he knew I loved him. We said it all the time. We were affectionate. We hugged each other before bed, and said, “I love you; see you tomorrow!” But did he really know what that meant? I would wake up in a cold sweat, screaming, worried that things were left unsaid.

On December 26, 2018, I boarded a plane for Bogotá, Colombia, to visit friends and celebrate New Year’s with them. I had spent the prior week with Mom and Dad, and Dad wasn’t feeling great and refused to go to the doctor. I remembered writing him a heart felt Christmas card (more like a Christmas letter) and leaving it on his desk. When I arrived to Bogotá, I learned after I left he had gone to the ER and had been admitted. I re-booked my return flight to come home early and went straight to the hospital. That was the beginning of the four and a half month journey, ending with his passing on April 14, 2019.

I never knew if he read the letter, as it sounded like they went to the ER shortly after I left. Once back, I asked him why he waited to go to the ER, and he said he knew that I wouldn’t go to Bogotá if he wasn’t well (which is true) and it was important to nourish relationships.

And today, as I was clearing boxes, I found the card/letter I had written, tucked into his day planner. The envelope appeared to have been torn open hastily, it wasn’t the neat slit that was the mark of bills and letters in their household. I re-read the letter, and understood that he knew.

Dear Dad,

I love you so much and I can’t imagine a life without you in it. It’s been so hard to see you in pain and I wish there were something I could do to ease the pain and discomfort that you’ve been feeling. And now I worry that I haven’t told you everything that you need to know – that I love you dearly. That I aspire to be like you – selfless, compassionate, and loving. You’ve been such a sounding board throughout my life – helping me with both minor and major decisions. Your guidance has turned me into the writer I am – one who loves the craft. I admire your patience with mom, and how much love and care you shower her with. I admire your quest for justice and your commitment to equality. I love how you’ve crafted a life that is extraordinary for both you and mom. I love how open you are to learning and curious about the world. It’s been one of my joys to travel with you and mom as an adult. I think fondly about how we rode camels in Egypt, how we navigated through the Seoul subways, how we walked along the Great Wall in China and then ate the soup where we had to crumble our own crackers. And celebrating your 50th wedding anniversary in Vienna was such a treat. It really was magical wandering from market to market, watching the snow fall gently (and not so gently), and listening to the music. You’ve been the best dad – there’s nothing I would have changed, even if I could. Whenever friends and colleagues meet you, they comment on how lucky I am – and it’s true. 

I love you so much, 
Lori

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A Flood of Fears

I’ve reflected a lot on why yesterday’s conversation with Mom upset me so much. The most obvious; Mom was disappointed and I was the cause of that disappointment. That never feels great as a child, and that’s my Achilles Heel. It didn’t matter that I actually can’t do what she was expecting. In her Alzheimer’s mind, it was Saturday, and that’s the day that we go out (which has been the case for almost a year). I don’t know why she remembered this yesterday, and not any of the other Saturdays this month I haven’t been able to see her, and I’m grateful she’s only remembered once.

Yesterday was one year to the day of me getting ready to leave for Charleston, and Mom came and sat on my bed and quietly said, “I think Dad is hurting.” (Mom and Dad called each other that when speaking to any of the children). I rushed into their bedroom. It was the one-year anniversary of my only time ever calling 911. And silently begging the paramedics to hurry. And asking the ER doctors if the infection they discovered could be fatal. And breathing a sigh of relief when they said, “No, it’s a routine infection in dialysis patients; we just need to get him on the right antibiotics.” (They were incorrect; it was fatal.)

For the past 363 days, the words of someone (I’m not sure who – a social worker? the ICU nurse? An assisted living facility director? Her doctor?) have constantly sat at the back of my mind. “Statistically speaking, your Mom will likely die within the next year. When someone spends that long with a partner (60 years in their case), it’s common for them to die of heartbreak.”

I’ve been rooting for Mom to hang in there. We’re almost at the year mark. I realize it’s a silly wish; people die when they die. Her making it to Tuesday will not buy her any more time beyond that.

And when she asked me how long it would be like this, my own fears were suddenly exposed. I don’t know how long it will be like this and up until that point I had done pretty well of staying in the moment and focusing on what was true right now. With her question, all those questions I hadn’t allowed myself to ask came flooding over me: Will I ever see her again? Will she suddenly pass away and I won’t be there like I was with Dad? Will she die alone? Will she know that she is loved, even though she’s alone? Will she ever understand that I would be there if I could be, but I can’t?

And, that’s why I couldn’t stop crying.

 

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.

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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.