“Really? Really?” She said with tears in her eyes. “You would do that for me?”
“Of course, Mom. I’m happy to.”
The “that” in question was repairing the hem in a pair of pants.
Mornings generally follow this pattern: I wake up first. I get myself together, make a cuppa tea, start work. I hear Mom wake up. It could be 8:30 am, it could be 10 am. I go upstairs, help her pick out clothes, and start her shower for her, making sure she has a clean washcloth and towel. Once she’s in the shower, I leave, still listening carefully for any loud thumps.
We were at the picking out clothes stage. There was a pair of pants she wanted to wear, but part of the hem in one leg had come out. She was utterly distraught. Barely awake, she couldn’t seem to grasp the task of getting a needle and thread and repairing the hem. Which is why I offered.
“You get in the shower, and I’ll have your pants hemmed and ready by the time you get out.”
She hugged me hard and stumbled into the bathroom.
As I hemmed her pants, I pondered. Why was this the task that moved her? Why was hemming part of one leg of a pair of pants appreciated so much? More than buying a house. More than moving in together. More than going on daily walks. More than eating meals together. More than comforting her when she wakes up at 1 am, or 5 am, crawling into my bed, grieving Dad.
There often isn’t much logic to our days now. But there is a lot of gratitude. Flowing both ways.
She could eat nothing but Chips Ahoy! and ice cream and be perfectly content. She’ll go to the pantry, get a handful of cookies, and on the way back to the living room take a bite of a cookie, set it down, take a bite of another cookie, set it down, and by the time she gets to the couch, she might have one cookie left. Or none. Or she may sit down for a moment then say, “I think I’ll get a cookie” and the process repeats itself. Throughout the day I gather up cookies and put them back in the packaging.
And ice cream. Oh, how she loves ice cream. After every meal she asks for ice cream. As I walk into the kitchen to get it for her she yells, “And a cookie!” She’ll finish the bowl, bring it to me as I’m cleaning up in the kitchen, and say, “I think I’d like some ice cream.” Depending on how much energy I have, I may explain that she’s holding her empty bowl, and has just finished her ice cream, or I may simply dole out another scoop. Given how often she eats ice cream, I make the scoops appear large, yet they are hollow. I pull the ice cream scooper along the top of the carton, and the ice cream forms a large curl. I arrange the scoops so that it appears to be a full bowl of perfectly rounded scoops. I use tiny bowls so that it appears she has a lot.
Last night I walked into the kitchen and found Mom at the counter, scooping out her own ice cream. She didn’t have a tiny bowl, but instead a large coffee mug. And she was packing it in. She scooped almost a third of a carton of ice cream into the mug then walked onto the porch to eat it. The carton was still on the counter; the freezer door open. I tidied up and joined her on the porch. “Is it good?” “Mmmm hmmm,” she replied, staring into space and spooning bite by bite into her mouth, rocking slowly in the dusk.
It was ice cream that alerted me something was wrong. It was summer 2015 and Mom and Dad and I were in Italy. They would send me to the gelato stand to fight the throngs of tourists, while they found a quiet reprieve nearby. I’d get our cones, bring them back, and no matter what flavor Mom had asked for, she would say, “I didn’t order that” and take my cone or cup. At first I thought she was joking with me, even though none of us were laughing. One day I realized she really didn’t remember what she ordered, and took whatever looked best.
It’s somehow easier to deal with when I remember it’s not intentional; it’s how her brain works now. And when I remember to order two cones of the same flavor.
Whew. It’s been three months (almost) since we moved to the new house. For three months, I’ve felt as though I’ve simply been trying to survive. And I finally feel like I can take a deep breath without threat of an emergency looming.
The first two and a half months were filled with tears. From Mom. Every. Single. Day. The gut-wrenching, sobbing, face-swelling tears. She hated the new house that she had declared we had to move into. She missed Dad. She missed her friends in Winston-Salem. She didn’t think the house was tall enough, and began plans to build a third floor. She hated the yard. As soon as her caretaker would go to the bathroom during the work day, she would sneak into my office, crying hysterically. Her doctor asked me if perhaps she were pulling at my heartstrings. Perhaps?
Even though Mom has Alzheimer’s, and asks me the same question multiple times in a row, I’ve been hesitant to say anything that could be misleading. In my mind I wondered, “What if this were the one time when her memory worked?” I finally realized that reality is fleeting, and it’s better to say what works in the moment rather than what might be considered the absolute truth.
Recently, she’s created the reality that Dad bought this house for us before he died. That this was where he wanted us to be. I’ve nodded and said, “Yes, he thought we’d be happy here.” And I do believe, if there is a heaven, or if there are souls, that he does believe we would be, or that we are, happy here. Thanks, Dad.
Mom and I spend a lot of time on the front porch in rocking chairs. I’ve had to come to terms that it’s okay not to be productive all the time. It’s been a hard lesson to welcome. We spend hours each evening, just sitting and rocking. Sometimes talking. Sometimes being. As we were sitting, she asked me what time it was. Time is confusing for Mom. I told her it was 5:00. She threw her arms up in the air and shouted, “YES!” I was flabbergasted by this response and asked why she was so excited that it was 5:00. She explained, “After 5:00, we’re allowed to go anywhere!” I nodded, wondering why we couldn’t go wherever we wanted before 5:00. She followed up with, “Do you know of any good honky tonks around here?” I stared at my God-fearing, church-going, stricter-than-all-get-out punishing mother in awe.
“I’m not sure I do, Mom. But I suppose we can find one.”
“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!”