“How many days until it happens?” Mom asked this question multiple times a day. And every time she asked it, sometimes only minutes after she had previously asked it, I reminded myself that in her mind this was the first time she was asking. And yet, I still got tired of answering. Because no matter what my answer, her response was, “Why so long? Why can’t we move in today?” And in my head I had to remind myself that even though I feel that we’re moving super quickly (I reached out to a realtor on Dec 28; I’m closing on Feb 22; we’re moving on Feb 23) for Mom there’s only the present.
So we made a paper chain, with each link one day. At first the chain reached from high on the curtain rod close to the floor. And a week later it was to the window sill. And a week later it was high enough that I had to tear off the link because Mom couldn’t reach it.
And this was what I saw today.
And with the increase of Mom’s excitement, I felt more anxiety. There are boxes to be packed! Had I changed my address on everything that needs to be changed? Have I signed up for all the requisite utilities? What have I forgotten? And oh, there are more boxes to be packed…
And with all the anxiety for all the things that have yet to be done, there’s also a palpable excitement. We’ll be making a home that each of us will be able to call ours. We’ll be creating a space that we’ll each love and cherish. And, once again, we’ll each be building our forever home.
She stood over the large grate in the bathroom, reveling in the warm air blowing on her legs.
I was transported back more than 45 years ago. My parents were frugal. Or maybe it was the 70’s energy crisis and they were patriotic. Whatever the case, the heat rarely was on in our lofty, barnlike house. When we heard the rumble, indicating heat would soon blow through the ducts, my sister and I ran to the one vent we were aware of. Thinking back, there had to have been other vents. It was a huge house. But the only vent easily accessible was the one in the hallway. It was large, maybe a foot or two squared. And when we heard the heat come on, we ran to the vent and curled up next to it, laying on the floor, balled up as tightly as possible so the heat would blow over as much of our bodies as possible.
Mom lives with me now. Over the holidays, she developed COVID and wasn’t able to quarantine on her own in the facility where she lived. She simply didn’t understand why she couldn’t leave her unit. Or be alone all day. Or why her caretaker (also in quarantine) couldn’t come to visit. Or how to turn the tv on. So, in a somewhat spur of the moment decision on day two of her quarantine, I moved her to my house, thinking we would quarantine together for 14 days or until neither of us no longer had symptoms. Even before she moved in, I assumed I had been exposed and decided to self-quarantine in order not to inadvertently spread the virus.
About four days into quarantine, I realized she needed round-the-clock care. I’d hear her shout from the bathroom, “What do I do now?” I’d walk in and she’d be standing in front of the sink, knowing she needed to wash her hands, but not knowing how to turn the faucet on (my sink is exactly like hers in her apartment). I’d turn the water on and she’d just look at me. “What do I do now?” I’d gently pull her hands under the water, squirt some soap in her hands and rub them together.
“Lori, come here!” I’d enter her bedroom, where she was choosing clothes to wear in the morning. She needed help choosing pants, a top, and a sweater. And underclothes. Sometimes she would put on a turtleneck and walk out of her bedroom. I’d jokingly ask if she were cold, and turn her back around to choose a few more layers to wear.
“What can I do to help?” she’d ask as she wandered into the kitchen as I made dinner. Once I asked her to cut the vegetables for the salad. “This is just not working!” she exclaimed with a huff. She was using the wrong edge of the knife to try to cut carrots. I asked her to set the table instead.
Once I came to this realization, I had a choice to make. Moving to the wing that provided round-the-clock care at the facility where she currently lives would mean no visitors (now due to COVID, however, possibly in the future). No walks. No balcony gardening. As I was weighing the options, she started telling me stories about how she could never go back there, thinking that was where Dad died. My heart broke. I listened, nodded, and hugged her. I reached out to her memory doctor to discuss options.
My house has one bathroom, with a 100-year-old clawfoot tub that is difficult to get in and out of. It sits on a hill, with multiple steps to the front door. It’s perfectly cozy for one person. It’s challenging, but not impossible, for three adults to navigate (me working from home, Mom, and her caregiver).
I called a realtor friend, warned her I was looking for a unicorn house, and asked if she would like to work together. Thankfully, she agreed, and a couple of weeks later I put an offer on a house. It’s a couple of streets over from where I now live. It’s not my dream house (my dream house is where I live now), but it has enough of what we need. I can make it a house that I love. That we love. Mom viewed it and said she loved it. She liked the space, she liked the light. We came home from the viewing and I found her in her bedroom putting clothes into a totebag. I explained that it would take a month to close and she was not happy. She didn’t understand why it wasn’t our house right now.
Not the January I planned for, but it’s the January I got, and here’s hoping February is even better.
PSA – COVID is real. For everyone out there who thinks it’s not, or jokes about it, I beg you to socially distance, wear a mask, wash your hands, or better yet, stay at home. One of the most difficult parts of quarantine/treatment is the stress of knowing that the disease can turn on a dime. One day you may be slightly coughing, the next you could be in the ICU. We’re both out of the quarantine period, and I’ll often wake during the night, hearing Mom coughing from the other bedroom. For people with Alzheimer’s, any illness exacerbates a decline in cognitive ability, and that cognitive ability often does not return even once the illness is over. Mom was most likely infected by someone who was asymptomatic. The facility she lived at had strict guidelines about temperature checks, screening, limited visitation, etc. Even if you’re feeling fine, please limit physical interactions, socially distance, wash your hands, and wear a mask (or two).
Mom and I walked around Beaver Lake tonight, in the hour before sunset. She said she liked walking in the evening, that was Dad’s favorite time of day. I don’t know if that was Dad’s favorite time of day or not. And it really doesn’t matter. She tells me a lot of things I know aren’t true, and I listen and nod and smile and say, “I didn’t know that.”
At one point we rounded a bend, and I wanted to cry at how perfect everything was. It was cold, but not too cold. There were others at the lake, but not too many people. The water was still enough to be a mirror for the clouds, and darkness was slowly enveloping us. We stopped. “Look at how calm the water is, Mom. Isn’t it gorgeous?” “Yes,” she said, “it’s perfect.”
“Well, this is just the neatest thing. I want one for my house.”
Mom loves hot tea. She drinks it all day, but not quickly. At her house, multiple times throughout the day, she pops a cup of room-temperature tea into the microwave until it’s hot enough for her liking. I don’t have a microwave. When we’re on my porch, I end up topping off her cup with boiling water every half hour or so. She insists she can do it, and then wanders around the house asking where the microwave is. I bought one of these cup warmers, thinking that could be a good solution. I made her a cup of hot tea, she kept it on the warmer, and voilà! Problem solved. And she could not get over how nifty it was. And she wanted one for her house.
I was hesitant. Introducing new gadgets and processes is tricky. Most of the time she can’t remember how they work or what they’re for. Things she can use independently: scissors, tape, eyebrow pencils, electric tea kettle. Things she can’t use independently: iPad, telephone, remote control. Things that she relied on Dad for, or was not proficient with, before her Alzheimer’s set in, it’s difficult to create those new pathways in her brain.
She asked for the cup warmer three weekends in a row. I decided to get it for her. After all, it didn’t get so hot and it had an automatic turnoff. What could go wrong?
“Okay, Mom, it’s here on the side table beside your reading chair. All you have to do is set your cup on it when you’re reading, and it turns off by itself when you take the cup to the kitchen.” I asked her to show me how to use it, and she put the cup on it. I was feeling optimistic.
A week later I arrived to her house and she was crying. She said she couldn’t make tea. I looked at the kitchen counter, perplexed. The cup warmer was there on the counter, but it was covered in something black. The electric tea kettle was off its base. I tried to put the tea kettle on its base and it wobbled. She had set the tea kettle on the cup warmer and the plastic bottom of the electric kettle had completely melted into a blob onto the cup warmer. I said a quick prayer to the engineers who developed that kettle – thanking all heavenly beings it had not caught on fire, even though it was melted down to its inner workings.
I turned to Mom. “Hm. Looks like these won’t work anymore. We’ll get you a new electric kettle. Why don’t we go to my house for a cup of tea?”
We’ve been participating in a wonderful music therapy study for about a month or so, where we listen to a playlist on a Kindle Fire, through a Jambox speaker. Every week Mom says, “I want that in my house.” She now thinks any shiny surface will keep her tea warm (she’s attempted to place her cup on my iPhone, the Kindle Fire, and the iPad). And trying to teach her to use any devices, even just to play music, would be futile. Today she pleaded, “Why can’t I have music in my house?”
I remembered a Google home mini that I don’t use often. We took it to her house and I set it up. I told her that she never needed to touch it; she could control it with her voice. I showed her how to say, “Hey, Google, play holiday music.” And “Hey, Google, stop.” I wrote the instructions down and taped them above the device. She giggled and said she had never seen such a thing, she couldn’t believe it. Then she asked me where the music was coming from. I pointed. She said, “That little fluffy thing?” I nodded.
“Okay, Mom. Your turn. I want you to practice turning the music on and off.”
She stood over the little fluffy orange device. “Hey, honey, play some music.”
“You’ll need to call it Hey Google, Mom. Otherwise it won’t know that you’re talking to it. Try again.”
“Hey, Google honey, play Christmas music. Please.” And the opening lines of Jingle Bell Rock filled the house. Mom burst out in a smile and danced a little dance.
“Okay. Now let’s practice turning it off.”
“Please stop, sweetie.”
“Remember to say ‘Hey Google’ first…” and then the device said something along the lines of “What can I help you with?”” I tried whispering to Mom, so that the device would listen to her, not me, but she won’t wear her hearing aids, so it was a comedy of errors – me giving a command, then ungiving it, Mom calling the device honey or sweetie and asking it to play music. And me whispering “Hey, Google….” from behind a mask to prompt her, which made it even more difficult for her to hear or understand.
When I left her house, Christmas music was still playing. And I haven’t gotten a call saying she can’t turn it off. This could be the start of a beautiful friendship between Mom and Google Honey Sweetie.
Yesterday, November 1, was my ten-year anniversary with Automattic. Ten years is a long time. Almost a fifth of my life. I’ve never really celebrated a major milestone with a company before. Most of my previous jobs held were under five years. That’s when it seems the counting starts.
I’m not sure if it was intentional, but the celebrations manifested over four fun-filled days. On Thursday morning a delivery of customized ice cream appeared at my door, each flavor of the four pints named a witty name related to our work. I made a video as I opened the box, and thanked my team for their generosity and cleverness. Only later did I find out that was from one person, not the whole team.
A few hours later, a large box was delivered. In it were gifts from my team and others in the company, and so many lovely notes and messages. It might have been the kindest thing I’ve received in all of this wretched year of 2020. I laughed as I opened several of the cards, and then began to cry tears of joy and gratitude. I feel so fortunate to work with so many talented, kind, creative, and all around super people. I went to bed, so grateful for this part of my life.
On Friday, I was on a video call when my doorbell rang. Doorbell rings are a rare occurrence now. I excused myself from the call, and opened the door to a dozen warm Duck Donuts. Oh, be still my beating heart.
I took a picture to share with the team, then ate a warm donut (or two), and again thought how lucky I am to be surrounded by such generous people. A little bit later the doorbell rang again, and when I opened the door, there was a beautiful plant in a gorgeous blue and white ceramic planter. And a box of amazingly delicious cookies from a bakery in NY.
Again, that night I went to bed so grateful for kind co-workers and the fortune to have landed at Automattic when I did.
And then on Saturday when Mom and I arrived home after our walk around the lake, there was a gorgeous bouquet of flowers from one of my favorite vendors, Carolina Flowers. At this point I was overwhelmed, so much gratitude for so many people in my life.
And then on Sunday, Larry the postal carrier brought two packages to the porch as Mom and I were rocking in our respective rocking chairs. One filled with Dandelion chocolates from San Francisco (oh, how I miss the Mission), and the other with a cookbook, Soul Food for Love, and a book of poetry.
Life can be really hard. And life can be filled with wonderful surprises that you never expected or anticipated. And all offer moments to be grateful. I’m truly overcome.
“…Happy birthday to yooooooooouuuuuuuuuu!” I sang over the phone.
There was silence.
I heard her sobbing quietly.
“Mom? What’s wrong?”
“I miss him so much. Why did he have to die so soon?”
And I marvel at how Mom can’t remember the last thing she said or the last thing I told her, she can’t remember any finite memories of Dad or anything they did together, but the love that they shared is in her bones, is in her psyche, and she misses that. Terribly, achingly, constantly.
“Oh, Mom. I miss him, too. It hurts so much.”
“Yes. So much. I miss him.”
“I do, too. So much. I’m working today but I’ll come and pick you up around 5 for your birthday dinner.”
“Whose birthday is it?”
“It’s yours, Mom! Happy birthday!”
“Mine? Are you sure?”
“Yes! I’m sure! I’ll pick you up and we’ll have dinner on the porch. I’ll see you then; have a good day.”
At 5 pm, she settled into my car. She turned to me, “I have my shoes. Where are we walking?”
I laughed. Again, amazed at how our routine is ingrained in her body. Every Saturday and Sunday we go for a walk, then she changes into sandals and we sit on my porch, her reading the newspaper, cutting it up, taping it into a spiral bound notebook, and me reading a book. I’ve disturbed her algorithm. It’s Monday. We’re not going for a walk; we’re celebrating her birthday.
“We’re going to my house for your birthday dinner and cupcakes.”
“Whose birthday is it?”
“It’s yours, Mom.”
“Yes,” I smiled and clasped her hand as I drove out of the parking lot.
We sat on my porch and she unloaded the tote bag that she always has with her. Running shoes, anklet socks, Hershey’s nuggets candies in a Ziploc bag, today’s newspaper, a spiral-bound notebook, scissors, Scotch tape, felt tip pens (no tops so the color bleeds through the tote bag), a bag of pretzels, 4 pocket size packs of Kleenex, two sets of house keys, two romance novels, and a tank top.
“Mom, don’t start any projects. We’re getting ready to have dinner.”
“Are we going for a walk?”
“Right now we’re eating dinner. It’s your birthday, so we have a special dinner. Fried chicken, sesame greens, cucumbers from the garden, and chocolate cupcakes for dessert. We can go for a walk after dinner if you’d like.”
“Whose birthday is it?”
“It’s yours, Mom.”
“Really!” and I laughed.
“How old am I?”
After dinner I FaceTime with my sister and her two children. They talk to Mom as I bring out a cupcake with lit candles. We all sing Happy Birthday, out of sync and out of tune. We tell her to make a wish and she says, “I wish I’ll live two more years.” My heart breaks and I choke back tears.
Mom opens presents, confused what they are and why she’s getting them. My sister and her children are great. They laugh with Mom, not at her. They tenderly say, “I love you, Gammy,” and we laugh and say goodbye.
Mom eats the cupcake – her favorite, chocolate cake with vanilla icing. She again asks whose birthday it is. I tell her it’s hers. I wonder if I could have made my favorite cupcake, vanilla cake with vanilla icing, and if she would have noticed.
I take her home and sign her back in. She waves at everyone sitting in the rocking chairs outside, in the lobby watching tv, saying, “Today’s my birthday!”
“See, right here where the plant forms a “V”? See this little leaf poking out? That’s a sucker. Just pinch it off.” He held my fingers and showed me how remove the suckers without damaging the tomato plant.
I might have been six or seven. We had moved to a rural part of the county a couple of years earlier, and Dad had planted a majestic garden. For decades, we grew almost all of our own fruits and vegetables, only venturing to the store for dairy and dry goods. Dad loved to garden. He loved tilling the ground, planting the seeds, tending to the plants, and harvesting. And I loved being near him.
All the years I lived in San Francisco I longed for a garden. I longed to grow tomatoes, beans, okra, eggplant. I longed for my own Rural Hall garden.
The first year I was in Asheville, I traveled so much for work. I was rarely home, and when I was, I was battling the weeds that had overtaken the yard. The second year I gave up the notion of “I can do this by myself” and hired someone to help landscape the yard (weeds be gone! mulch, welcome!) and build a raised bed. That was in November 2018. I was so excited about the possibilities that lay ahead for the spring. Dad and I talked about what I could plant, where to buy seeds.
And then he fell ill in December. And I moved back to Winston-Salem to help care for him and for Mom. And spring came. And Dad died. And I moved Mom to Asheville since she couldn’t live on her own anymore. Well into the summer I planted tomato plants. And still traveled for work. And was so busy. And grieving. And the squirrels came. And the bears. And I found half-eaten tomatoes throughout my yard and on my doorstep. And I cried. And cried some more.
And then came the pandemic. I turned the soil, planted the tomato plants, and caged them. I’m not traveling for work anymore, so every morning after my morning tea I walk outside and tend to the tomatoes. I pinch the suckers carefully, just like Dad taught me so many years ago. The smell of tomato plants is very particular. I love having that smell on my hands when I go back inside to start my day.
During one of Dad’s last stays in the hospital, we were alone in the ICU. I held his hand and we talked about what was happening. We knew he was dying, we just didn’t know when. We thought we had months and in reality it was only days.
As we sat there, I asked him how he was thinking about what would come next. Of what happens once he dies. The afterlife. His soul. He responded, “We die, and that’s it. There’s nothing more.” I wasn’t sure I heard correctly. Dad was such a spiritual and religious person. What was he saying? I asked some more questions, and he was so matter of fact. Death is death. Was this what he needed to believe to let go and leave this life? I wanted to scream, “NO! There has to be more. You can’t leave me. We have to continue to have a connection even when you’re not physically here. A part of me will die with you if that’s not true.”
But I didn’t say that. I fought back tears and listened.
I held his hand and we talked about his former baseball career, about family, about friends, about dreams and hopes, and about books we were reading. We told each other we loved each other and held each other tight.
And today, when I was in the garden, tending to the tomatoes, I thought to myself, “There is something more. You’re still here, Dad.”
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.