As Mom’s dementia progresses, she becomes someone I love spending time with even more, and this causes me considerable distress. Why is it that I love her more as her brain deteriorates? And who is the *real* Mom? Is it the Mom who I knew for ~50 years? The one who criticized me and told me I wasn’t good enough? Or is it the Mom from the past 5 years who calls me sweetheart, who hugs on me, who tells me she loves me? Or is it okay for her to be both?
She shakes her hands and arms when I arrive to visit, with tears running down her face. She asks me if she can go home. When I tell her yes, she stares earnestly into my eyes. “Really? Really?” she asks. “Yes,” I tell her. I don’t know if home is a place, or home is people. I don’t know if it matters.
I buckle her seatbelt and we go on our way. We sing the songs she loves and drive on roads where the speed limit is low, and few cars are to be found. I ask her if she is happy and she says yes. Every so often, she sweeps her arms in front of her and says, “So beautiful!” We might be in the city, or surrounded by farms, or in the woods. It doesn’t seem to matter. It’s just that we’re not in her room, and she’s happy.
“I must not have raised you right. Life is hard. The point of life is not to have fun, but to survive.” And then she hung up.
I was 22, recently graduated from college, and in the first few months of my first public school teaching job. It was so hard. I was determined to provide stimulating, interesting learning experiences for each of the twenty-six children in my third grade classroom in rural North Carolina. I stayed late after school preparing for the next day. I researched, I created sample craft projects, I made instruction sheets for activity centers. I listened to children cry, hurt by real or perceived slights. I noticed bruises and bandaged boo boos. I listened to praise (rarely) and complaints (often) from parents. One night I was overwhelmed by the difficulty of it all. I called my Mom, in tears, saying I just hadn’t realized how hard it would be. Her response? “I must not have raised you right. Life is hard. The point of life is not to have fun, but to survive.” And then she hung up. My roommates were standing nearby, wide-eyed, wondering why I had chosen to call my Mom, of all people.
I think about that call a lot, Mom. I try so hard to cultivate moments of joy. And I believe you want those moments of joy, too, regardless of what you once told me.
Joy has taken different forms over the past year. At first, it was:
Long walks in the park, commenting on the birds, and the flowers, and the sky
Then, walking much shorter distances at the mall, sometimes stopping to purchase something bright and shiny
Then, going out to eat, chicken fingers and fries on Saturday, and pizza on Sunday, asking to sit in the same waitress’ sections because they know how you like your hot tea prepared
Now, going for drives, without you having the will to eat or the energy to walk
You stare straight forward, eyes half-closed, not seeing. I drive, left hand on the steering wheel, right hand holding yours, our fingers intertwined resting on the corduroy wales of your pants. You absentmindedly trace my fingers, up and down, up and down, not looking, back and forth, back and forth. Every so often I glance to my right, seeing if you’re still awake (you are), seeing if there’s any glimmer of recognition (there isn’t). I play the same playlist every time we get into the car. Occasionally, your fingers will play out the notes on my hand as if you’re playing the piano, or your toes will tap along to the rhythm. After You Are My Sunshine, Amazing Grace, and Take Me Home, Country Roads, you’ll say, “that one, good.” I press the rewind button so that we can hear your favorites again. Sometimes I’ll hear you humming along, or even singing one or two words, small and tinny. I smile and choke back tears.
We have a few routes we drive on, all on windy roads where the maximum speed is 35 mph. You want to be outside, not inside. It doesn’t matter if we talk (we rarely do), or if we drive the same route (we often do). You seem content to simply be.
It turns out, you were right after all. Life can be hard.
Finding a Christmas gift tag you wrote years ago (to someone else) and not being able to toss it out
Crying for days before the anniversary of your death
Having conversations with you, asking for advice
Doing the NYT Mini and wishing we were solving it together
Waffling over the simplest of decisions
Working on projects around the house and wishing you were here to give guidance
A tower of wet, crumpled Kleenex beside my bedside
It’s been four years since we said goodbye. That moment feels like so long ago, and simultaneously it feels like it was yesterday. I am so grateful for every moment that we spent together, and so sad we don’t have more moments to have in the future. When friends talk about moments with their dads, I feel a pang of jealousy. On days when I need to feel you close by, I drink out of the Wachovia coffee cup that you had when you worked there over 40 years ago. It’s not a great cup, but I find comfort knowing that your hands once held it as I’m holding it now.
Here are the things I want you to know:
Mom’s health is declining, and I’m keeping my promise to you. I’m taking care of her as well as I can. She rarely remembers anything past the present moment, but I honestly believe she’s happy when we’re together. She loves to eat ice cream, and occasionally I’ll have a cup of butter pecan in memory of you. We ride through the country and listen to the playlist that you and I made together, when she was first diagnosed with Alzheimer’s, and you saw an article that music could help stimulate memories in Alzheimer’s patients. Her favorite songs are Amazing Grace (which she insisted we play twice at your memorial service), Peace in the Valley, and It’s Hard to be Humble. I’m not sure how that last one made the list, but I remember it was one of your favorites, too. We sang along (loudly and out of tune) on the way up to the cabin. Mom still remembers some of the words, which amazes me. We still sing out of tune.
My friends from Bogota were here visiting over the weekend. We had such a good time and I wish they could have stayed longer. They helped me rearrange some furniture so I can get my sewing room set up. I wish you could see the house where I live now (and where Mom lived also). I think you’d really like it. It’s different from the house on Woodward, but has the same cozy feel. This is the first place I’ve lived that you never visited. Although, you’re kind of here; your ashes are in a corner in my office. You were adamant that you wanted to be cremated, but didn’t share what should be done with your ashes. I’m kind of mad about that, Dad. Why didn’t you articulate that last bit? I feel like I should do something, but nothing seems right. So for now, you’re across from my desk.
It’s finally warming up here in Asheville. I ordered a bunch of gold, pink, and red chrysanthemums to plant in the garden. I so wish you were here to help with the planting. When I think of gardens, I think of the time that you and Mom and Ashley went to the cabin and left me at home. I wanted to be helpful, so I worked in the garden all day. I pulled weeds from in between the rows of vegetables, then decided to “clean up” the wild raspberries. I clipped and clipped and clipped, until I was sure I had cut back all the weeds. When y’all arrived back home, I remember Mom screaming and not speaking to me (for a long time), and you gently requesting that I not work in the garden without your assistance. In my attempt to clean up the vines, I had inadvertently cut back all the new growth and pretty much decimated that year’s crop. You never yelled, which really surprises me now. I did a lot of things that warranted yelling.
Work’s going well. It’s really busy, and we’ve started traveling again. So far this year I’ve traveled to Vienna, Glasgow, Madrid, Cape Town, London, and Zion, Utah. While I was in Vienna, I walked to the Belvedere Museum, where we went for yours and Mom’s 50th wedding anniversary. I remember how we marveled at the grounds, and delighted in the coldness, with snow all around. And stood in awe for what seemed like an eternity, examining every aspect of Klimt’s paintings, as others passed by. That was a magical day, wasn’t it?
I miss you, Dad. Even though we had 50 years together, I wish it were longer. I really miss you.
Daffodils take me back to my five-year-old self, when I picked the flowers for my kindergarten teacher from my Mom’s carefully tended beds, wrapped the stalks with a dripping wet paper towel, then crumpled aluminum foil around the stalks as a makeshift vase til I could get them to school and proudly thrust them at my teacher.
Mom loved her beds of bright yellow daffodils and deep purple hyacinths. I loved watching the plants sprout through layers of pine needles, sometimes through remains of snow, and made bets with myself guessing how long it would be before the buds blossomed. I never was right, though I told myself I was.
I love that daffodils have such a scant smell. A sweet one, though. One of memories. One of winter ending and spring just arriving. One of happiness and joy to come.
The skies are blue, the days are sunny. The wind blows fiercely, which I love, whipping my hair across my face, blowing away all my cares.
She invited me to join her in her morning plunge, a dip in the tidal pool at the shore. She warned it would be cold, and that for maximum benefit we needed to stay in the water at least 12 minutes. Uh, no.
This is not something I would normally do. I prefer not to rise early. I don’t particularly care for icy water. I said yes.
I waded in tentatively. It was cold, but not numbingly so. Fish swam around my ankles. I walked quickly deeper, then slowly. It was time. I started swimming to the outer wall, loving the buoyancy, loving the warmth of my muscles cutting through the chill of the water. We swam, we talked, we floated, we marveled at the beauty surrounding us.
The crying is more intense, yet shorter in duration. Once Mom recognizes me as me, she starts shaking and crying, sobbing, “My baby, my baby.” I hug her and hold her tight and murmur, “It’s okay, Mom, it’s okay.” This display of emotion lasts for about 30 seconds, and then she pulls back, her hazel eyes staring up into my brown ones, her gripping my shoulders, and very seriously she says, “Is it okay? Can we go?” I nod and she says, “Really? Really?” I nod again. Her whole demeanor changes when we’re getting ready to go out (which at this time of the year involves two layers of pants, three layers of tops, a heavy coat, scarf, hat, mittens and earmuffs). She is transformed from a zombie, wandering around aimlessly and staring into space, to an excited 81 year old lady. Conflicting emotions arise in me, all of which are true, all at once. I love seeing her happy, even if just for a brief moment. I wonder (again. Again, again, and again.) if I made the right decision to move her to a facility. Guilt, over the times I’m not there. Thankful for the time we can spend together.
It’s Christmas Eve and all of our regular restaurants are closed. We go to a hip restaurant downtown. As we sit down, I notice how busy it is and make the decision to order an easy appetizer, hummus, so that Mom has something to snack on while our sandwiches are being prepared. Mom is not patient. As soon as we get settled, and she wants to know where our food is. Thankfully, the hummus arrives quickly. The waitress places it in the middle of the table and gives each of us a share plate. Mom pushes the share plate to the side, pulls the hummus platter towards her, and asks me if I’m going to eat. I can only laugh. I tell her my food is coming as she snacks on celery and carrots and pita and hummus. The waitress eyes us quizzically as she sees the platter in front of Mom, but doesn’t say anything. Again, all the conflicting emotions are all true, all at once. Thankful that we are here together. Bemused that she’s forgotten the concept of sharing. Sad that I am now the caretaker and she is the care-ee. Anxious wondering how many more of these moments we’ll have together. And grateful, oh so grateful.
I only knew him for eight months, and yet it felt like a lifetime. He lived across the hall from Mom. He and Mom immediately took a liking to each other. When I arrived to visit, they would be sitting in the living room area, cuddled close, holding hands. The first few visits, I wasn’t sure whether to simply leave, and not disturb them (they seemed so happy together), or engage with both of them.
I would sit with both of them until Mom said she was ready to leave, and we would traipse on our adventure. Sometimes she expected him to come with us, and I would gently explain that he would stay at the facility, and we would head out. I looked forward to seeing him each time I arrived. I asked him how he was doing, and what a highlight of the day was. When I arrived during meal times, it warmed my heart to walk in on he and Mom holding hands at the dinner table.
I arrived today and his door was closed.
As I walked towards Mom’s room, a staff member let me know he passed earlier this morning. Tears sprang to my eyes, a lump settled in my throat, and I felt heavy all over. I shouldn’t have been surprised. This is the next step at these facilities. And, yet.
Mom and I went to the park. We walked, we sat on benches. We didn’t speak. As we sat, we held hands, and we each cried. I asked Mom if she was sad, and as tears rans down her face, she said, “No.” I squeezed her hand and even though I didn’t voice it, I acknowledged I was sad. So very, very sad. Sad for the loss of the person who I had looked forward to visiting as much as Mom. Sad for his daughters, knowing what it feels like to lose a father. Sad for Mom, who even if she can’t verbalize it, will miss sitting with him and holding hands. And sad for me, knowing that a similar loss is in my future.
“I am so glad you’re here. I have not eaten all day. I am so hungry.”
Mom shares this when I arrive, as soon as she stops crying. When I visit, she’s usually either in her bed, napping, or wandering the halls. Once she recognizes me, she starts shaking and crying, opening her arms wide. As I embrace and calm her, telling her over and over that it’s okay, she says, “I thought you’d never come.” And then tells me she’s starving. I know that she has just eaten, and I don’t mention it.
We have our routine. Saturday is Campfire Grill. Sunday is Flat Rock Wood Room. Monday is Village Bakery. Chicken strips, pepperoni pizza, Avocado BLT, respectively. Consistency is a blessing.
It’s Sunday. We split a garden salad. She has trouble using a fork, so she picks up pieces of lettuce with her hands and manipulates them into her mouth. We’re at a point where I state what I want to be true, and she agrees. “This is so delicious.” She nods and says, “So good.” “This is just the best day.” “Best day,” she repeats. “Isn’t it just a beautiful day?” “So pretty,” she echoes. The pizza arrives, and I caution her it’s hot. This does not dissuade her, and after attempts of sawing it with her fork, rubbing the tines back and forth, back and forth, with little luck, she picks it up with her hands.
After one slice, she declares herself full. I ask for a box and the check and we prepare to leave.
She carries the pizza box, containing all but two slices of pizza, and I help her navigate her way to the parking lot. I go to open her car door, and she says, “Have we eaten yet? I am so hungry!”
I laugh and tell her that I have a surprise for her in the car. We buckle in, and I tell her to open the box she is holding. She is delighted with the snack for the ride home. “This is so good!” She exclaims. It is. Everything is so good.
Mom’s outfit and stance remind me of Paddington Bear. She wears an oversized white sweatshirt/jacket that hangs down to her mid-thighs. I can’t remember if it’s always been this large on her, or if she’s somehow shrunk since she bought it years ago. She’s taken to wearing her sunhat low across her eyes.
She was in this outfit, curled up in bed, when I arrived. She heard me enter the room, opened her eyes, smiled, and sleepily said, “I love you.” I stroked her long gray hair, and told her to rest. She sat up and said, “No, I’m ready to go!” I helped her put on her tennis shoes and we headed to the park. October is the most beautiful month. The skies are a palatable blue; the air just the right amount of chill; the birds noisily chirping in the tree tops; and the leaves orange and red and yellow and brown. As we began our walk, Mom uttered what she tells me every week. “No one has fed me in days. I’m so hungry.” (The words don’t come out this coherently, but this is the message she’s conveying). She says this, regardless if we’ve just finished a meal or a snack. She says this when we get in the car, leaving a restaurant. She believes she is hungry, so we spend much of our time seeking food. I tell her we’ll go to our favorite restaurant, Campfire Grill, after we finish our walk. She nods.
At Campfire Grill, I ask her if she’d like to eat inside or outside. She stares at me, then says, “Outside.” The hostess sits us near vines and flowers and herb gardens. The sun is shining brightly, almost blinding, and will soon drop behind the trees. Mom unsnaps her jacket. It looks as though she has a t-shirt hanging out from under her sweater. I lean forward to see what she’s wearing. She’s put her underwear on over her sweatpants. I had not noticed earlier, because her jacket hung so far down her legs. Inside, I feel a slight pang, knowing this marks another milestone. The confusion of what things are for; confusion about order; confusion about timing. She tells me she needs to use the restroom. I walk with her; she cannot follow directions anymore, but likes to hold my hand and walk slightly behind me.
I wonder for a moment if I should try to correct the layering of clothes, and decide against it. She likes to tuck her sweatpants into her socks, and correcting the order of clothes would mean taking shoes off, taking off the (outer) underwear, untucking sweatpants from socks, taking sweatpants off, putting on underwear, putting on sweatpants, tucking into socks, putting on shoes. It feels like a lot of effort for not much gain.
I stay in the roomy bathroom with her; this is now necessary since she’s forgotten how to flush the toilet and use the faucet. When she pulls her sweatpants down, I see she has underwear on both underneath, and on top of, her sweatpants. This small discovery makes me incredibly happy. She still understands underwear goes under clothes. She just decided to add an extra layer on the outside. She finishes her business and I help her pull up her pants, and help her step out of the underwear that is on the outside. I turn on the faucet, test to make sure the water isn’t too hot, and pump some liquid soap into her hands, rubbing her hands together under mine. We dry our hands on rough industrial brown paper towels then make our way back to our outside table.
I’ve ordered her a salad with grilled chicken, and she eats a few bites then says she’s full. I tell her we’ll get a to-go box, and she’s happy about this. She hates wasting food. She used to attempt to wrap anything and everything in a paper napkin, then stick in into a pocket or purse. Because of this, I usually have a Tupperware container in my purse so that we can package up leftovers, but today I’ve forgotten. The server brings us a compostable box, and I help Mom put the salad in it. She looks at me. “Did we already eat ice cream?” I smile. Her favorite thing. “Not yet, but they’re fixing it for you now.”
A bowl of plain vanilla ice cream arrives. Mom eats the whole thing, and scrapes the bowl. The server comes and asks if we need anything else. Mom tries to tell her how much she loves ice cream, and random words come out, with animated hand gestures. The servers are so kind to us.
We arrive back to her place, take our shoes off, and climb onto her bed, ready to watch a Hallmark Movie. Mom waves her hands, and stutters “outside” “pretty day” “ready.” I ask her if she’d like to go for a walk. “YES!” She says enthusiastically, as though challenging why I would suggest anything else.
We go back to the park. We walk by the pond. She stops and asks if we’ve already had ice cream. I tell her we have, and we can get some more if she’d like. “Oh, yes.” This time we go to the local ice cream parlor, where when the ice cream scooper sees us, she laughs and says, “Small cup of Oreo?” I laugh and say, “You know it!”
This routine brings me so much comfort. I know it won’t last forever. But I can treasure it while it does.
Today is Dad’s birthday. He would have been 82. The wish today was the same as it has been every day since he passed three and a half years ago. I wish I could have one more day with him. One more conversation. One more NYT Mini Crossword. One more joke, where I would laugh hysterically until tears rolled down my face.
In a work meeting today, my colleague mentioned he was experimenting with an AI (artificial intelligence) illustrator, and showed me some pictures he had generated. He asked me to give it a go. I requested “a tall dark-haired adult woman in a floral dress with her silver-haired father in khaki pants and a blue flannel shirts, looking at a waterfall in the modern tradition.” One of the results struck me. It could have been us, on a hike, if the man had a little less hair and the woman had a little more height. Happy birthday, Dad.
LoriLoo 