“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.
“…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!”
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.
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.
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 went to Mom’s to refill her pill boxes (her caretaker, Gloria, isn’t allowed to dispense medicine, only remind Mom to take it). Gloria brings all the medicine and pillboxes down to my car (which I’ve Cloroxed repeatedly) in a plastic bag, I refill the boxes, Clorox everything I’ve touched, and she takes them back up to Mom’s. Today I asked Gloria to have Mom come to her balcony.
Mom initially looked out into the distance, and I, three floors down shouted, “Here! Mom! I’m here!” She eventually saw me, we waved at each other, and we tried to talk, but Mom couldn’t hear me because she won’t wear her hearing aids. I yelled louder, then realized it was futile, so we blew kisses instead. And she smiled. And I attempted to take a selfie of us, because I realize we have so few pictures together, and got a portion of my forehead, and her smiling. And it was a good day.
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?