“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.
Last week, I was invited to watch Follow Me Home, Peter Bratt’s critically acclaimed film, followed by a discussion with Peter and Benjamin Bratt. The film has been re-released and is now available for free streaming online. The movie was originally released in 1996 and at its core is an extraordinary tale intended to empower every American citizen to find their home in this country, to feel like they truly belong in this place and to believe they’ve got an equal shot at prosperity for themselves and their families. But it is meant for today. It is a message that is more urgent today than ever before. As I watched, I had a hard time believing that it was created 24 years ago.
Drawing upon Native, African and Latino culture, Follow Me Home is a rebellious fable of four Los Angeles street artists who hatch a plan to cover the White House with vibrantly painted murals. Joined by a woman with a haunting secret, they set off on an impetuous joyride across a desert landscape steeped in magic, mystery, and danger.
I invite you to watch the film and then join me to attend three curated virtual events over the next three days (October 28-30) that will engage us all in frank conversation around the themes of race, class, and gender that the film explores. The three-day progressive event will bring together leaders and influencers in art and culture, faith and spirituality, activism and politics, and business and tech to reimagine the future of national leadership that includes the perspective and point of view of communities that have traditionally been ignored, marginalized or, worse, vilified.
It’s ambitious. But so needed in this moment.
The conversation won’t conclude with definitive answers or resolute actions. But, it will be a starting point. The start of awareness. The start of acknowledgement. The start of acceptance. The start of action. And, ultimately, the start of healing.
I prefer Sharpie extra fine point pens. I had drained my last two and still had 300+ postcards to write. I’ve avoided stores since March, and didn’t have the luxury of time to order some online.
I had ordered the box of Pilot Precise V5 pens for Dad. He was in one of his extended stays in the hospital, and still taking care of business as though he wasn’t going through daily dialysis treatments and weekly chemotherapy. He asked me to bring yellow legal pads and Pilot pens from home – those were his tools of choice. There was only one Pilot pen at the house and the local Staples was out of them. I ordered a box of them on Amazon and had them delivered the next day. He used one from the box of twelve before he passed.
That box sits in my office. I never cared for Pilot pens. They explode on planes into an inky mess. That was important at one time in my life. I generally like a thicker line; the Pilot’s are razor thin. The box has sat in my basket of writing materials – highlighters, markers, pens, Sharpies – since last May. Each time I glance at it I fondly remember Dad’s preferences, but I’ve never opened the box.
Until now. I took out a pen and began writing the message on the postcard. It was surprisingly perfect. The fine line allowed me to write the entire message without crowding. I thought of Dad with each postcard I wrote, and how if he were still alive, we’d be writing the postcards together. Voting was so important to him. When I lived in California, he called me every voting day to ask if I had voted (I had). He volunteered to ensure everyone could vote. Our last trip together was to Montgomery, Alabama, where, in his declining health, he insisted on walking across the Edmund Pettus bridge in Selma. It was a cold October day, and we had to stop every few feet for him to rest and catch his breath. And he was so happy.
And last night I finished the postcards. Five hundred to voters in Georgia, encouraging them to vote. Written in my hand, with Dad’s pen. A labor of love.
Tonight’s presidential debate was a hot mess. A disaster. As many commentators lamented, “A sh!t show.” I am embarrassed that the two men running for the highest office of this country cannot follow the simple rules of a debate.
Listen to the question the moderator asks.
Listen while your opponent has a chance to answer.
If allowed, respond.
The amount of interruptions, by both men, but primarily by the current president, was abhorrent. This is what got us to where we are today. We don’t listen. You don’t have to agree with what the other person is saying, but for goodness sake, listen to them. In these debates you only have to listen for 120 seconds, and then you get your turn.
120 seconds. The amount of time to take 12 deep breaths. The amount of time to brush your teeth. Half the length of the average pop song. 120 seconds. Not an unreasonable request.
Here’s what I took away from the debate.
The current president has no manners. He does not respect law and order. If he did, he would follow the rules his campaign agreed to when invited to the debate. The amount of times the moderator had to ask him to be quiet was unbelievable.
The current president has no compassion. To mock another human about the death of one of their children is unconscionable. I don’t care what party you belong to. That’s cruel.
“…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!”