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.
I enter Mom’s room. It’s 11:17 am. She’s curled up in a fetal position in her bed, winter nightgown on and sweatshirt jacket buttoned up to her neck. She hears me, but I can tell she can’t see me. “Mom, it’s Lori.” I walk closer to her bed. A few steps away she recognizes me and her face lights up. She extends her arms and I kick off my shoes and crawl into bed with her. I scootch down so that my head is on her chest, so that she feels like the Mom, and she hugs me tightly. She tells me she’s so hot, and I unbutton her sweatshirt jacket. “Is that better?” “Oh, yes.”
She squeezes me tightly. I squeeze her back. I tell her I love her. We lay there like that for a while.
“Well, I guess we should get up,” she says. I stroke her hair away from her face.
I help her sit up, and I suggest outfits from her closet. She vetoes a few choices before approving a colorful top with a bright yellow top beneath. Mom loves layers.
I guide her into the bathroom. She’s not sure what to do. I turn the shower on, constantly testing it to make sure it’s warm, but not hot. Her skin is paper thin and I want her to be comfortable, but not hurt her. I help her pull her nightgown over her head. She stands there, confused. I ask her if she’d like to shower and she replies, “Oh, yes.”
I gently guide her into the shower, and ask her to hold her head back so that I can wet her hair. I massage shampoo into her long silver hair, and constantly check to make sure no soap drips into her eyes. She stands there, water running down. I take the soap and lather her arms, her torso, her body. I ask her if she can rinse off by herself. “Oh, yes.”
When she’s rinsed herself, I ask if she’d like me to turn off the water. “Oh, yes.” I hand her a towel, and she buffs herself dry. I help her into her underclothes, then the many layers that she prefers. “Would you like me to do your hair?” “Oh, yes,” she replies.
She sits on the toilet, and I gently brush her hair, drying it on low, curling it with a round brush.
Why am I tearing up? I want this moment to last forever. Is this what it feels like to mother? To cherish the moment, and feel so incredibly sad that you know you won’t have it again? I braid her hair and tell her she’s beautiful. “Maybe,” she says.
I ask her if she’d like to wear earrings. “Oh, yes.” I carefully place them in her ears. “How about a necklace?” “Oh, yes.” I place one, then another, necklace around her neck. I hug her tightly, In my mind, I know that we’re steadily approaching an end. In my heart, I yearn for the magic that would allow this moment to last forever. Oh. Yes.
The last few months have been full of turmoil. I didn’t realize until recently that I was carrying the emotional load for two – for me and for what I imagined Mom was feeling.
I didn’t realize how lonely and empty our house would feel without Mom living here.
I didn’t realize how much I would miss, or would long for, the tender moments, with the not so tender moments easily fading from memory.
I didn’t realize how tormented I would feel when I visited Mom, and things were better, and I wondered if they could have been better if she were still at home.
I didn’t realize the heartbreak I would feel each time I left her new residence and Mom asked if she could come home with me.
I didn’t realize that minutes after I left, Mom likely didn’t remember I had been there.
I also didn’t realize that the sadness and guilt I felt upon arrival and seeing her sitting and staring into space is likely not shared by her. That her resting and having less stimulation is a form of cognitive reserve, a way for her body and mind to store up energy and serotonin so that our visits are lovely and not fraught with violence. Just because it causes me guilt, doesn’t mean it’s causing her sadness or uncomfortableness.
I look back at my writings and talk to close friends who remind me of the agony of our existence at the beginning of the year. The screaming, the sobbing, the hitting, the yelling, the throwing objects, her insistence Dad was alive and had left her. There were also many precious moments; however, I never knew what I was in store for, and mood swings were swift and often.
I compare that to our visits now. Every visit is lovely. Simply lovely. I say hello to her and it takes her a couple of beats to recognize me. A smile spreads across her face, and she exclaims, “You came!” or “My baby!” Followed by a tight hug that neither of us wants to release.
She associates my arrival with leaving her residence. She asks, “Where are we going today?” It’s always the same, and I’m happy to repeat myself. “Would you like to go for a walk in the park?” “Oh, yes!” She exclaims, “I would really like that.”
After we do our lap at the park, which is becoming slower and shorter, I ask her if she’d like to get ice cream. “Oh, yes!” I order her a small cup of cookies and cream, and I’m well on my way to sampling each of the flavors at the Mexican paleteria: Ganzito, cafe, coco, mango, limon, and fruits I’m just now learning.
On the way home, we stop at Ingles supermarket. She likes to push the cart, very slowly, fondly picking up packages and handling them oh so carefully. Occasionally she’ll ask if she can have something, and I always say yes. Old age is not a time for boundaries. We generally get a package of Chips Ahoy and a package of almonds and a bouquet of a dozen red roses. Once home, she carefully takes the roses out of the bag, slowly trims each stem, and places them in a vase that I’ve filled with water. She enjoys the act of trimming and arranging, and seems surprised when she turns around and sees me there.
We crawl onto her bed and watch the Hallmark channel for an hour or so. We sit beside each other, holding hands. Sometimes she’ll lay down, insisting I keep the tv on. Sometimes I’ll bring a book and she’ll “read” her paper (sometimes right side up, sometimes upside down). Sometimes she’ll ask me to give her a manicure (but never with colored polish). Sometimes she’ll ask me to do her hair (I love French braiding it and twisting it about).
Every visit is peaceful. There are no outbursts, no violence, no yelling. Yes, she’s on more medication, and she seems content.
I’m learning to enjoy each visit for just that. A lovely day together. And I refrain from wondering if I made the right decision. Wondering if we could have this peaceful existence in the home we shared. Wondering if I could have eventually kept her safe at home. When I get ready to leave, she asks me if she can come with me. I tell her, “Not today.” She shrugs her shoulders, casts a glance downwards, and says “Okay.” I’m sure that my guilt over not bringing her “home” persists much longer than her accepting my answer and moving on.
Mom lives in the present. She’s not fretting about the past or debating over the future. I’ve been doing that for both of us, and with the help of an amazing grief counselor, I am learning not to. Baby steps.
Was it a mistake to move in together for a year and a half? Did that make this current move even harder on her?
Will Mom ever believe that her current living situation is her home?
Will she ever forgive me for moving her “into an old folks’ home”?
Will we ever have a visit where it doesn’t end with her begging me to take her home, crying, promising that she’ll be good, and me trying to hold back sobs until I exit the building?
Am I seeing my future?
There are moments she seems so lucid, when she tells me she is *not* going to continue living where she is. And there are moments when she cannot string words together in a coherent thought. And most heartbreaking, the frequent moments when she asks me if we can go look for Dad, because she hasn’t seen him for a while, and she’s worried about him. And then she’s angry, so angry, that he’s deserted her. There are no words to comfort her.
Last year, I bought this larger house so that she could surround herself with her furniture, her things, hoping that would make her feel more comfortable. And now those things, those artifacts from her and Dad’s life, mock me when I walk in the door, reminding me that I quickly lost one person I cared for so deeply, and am now slowly losing another.
There are days I want to give it all away, not have the visual reminders. And other days I regret the hastily discarded things after Dad’s death. I’ve been cautioned not to make any major decisions right now, to give myself time to feel the feels and let emotions run their course. More than May flowers, I hope all of these April showers bring some sense of peace when I ponder these questions.
It’s an uncomfortable feeling. I arrive at the exterior door, check through the window to make sure there are no residents prepared to exit, enter a code, slip in, and quickly close the door behind me. I walk down the hallway to Mom’s doorway and knock. I notice another resident on the couch in the living room, halfway between sitting up and laying down, hunched over. There is no answer from Mom’s room, so I crack open the door, and call out. Still nothing. I walk through her apartment and she’s not there. I walk to the common kitchen, no one. I walk closer to the resident on the couch and realize the resident is Mom, curled up in the fetal position, leaning against the arm of the couch, sobbing and shaking. My stomach sinks and I feel a hard lump form in my throat.
“Mom?” I can’t tell if she doesn’t hear me, or if she’s ignoring me. “Mom?” I say a little louder, and place my hand gently on her arm. She jumps and stares at me with a wild look. “Mom, it’s Lori.” She wails louder and starts cry/screaming, “Take me hooooommmmmmme. Please. Please. Take me hooommmmmme. I hate it here.”
I hug her and rock her. She’s gasping for breath. “I hate it here.” I suggest we go outside to sit on the patio; it’s a nice day. I enter the code to exit and we sit, staring at the lawn. We don’t talk. We just sit. After a few moments, she wants to go back inside. I enter the code and the door doesn’t open. I try again. And again. I see a nurse’s aide in the hallway and knock loudly. I learn there is a different code for each door. I’m holding back my own tears.
We go to Mom’s apartment and sit on her bed together. She’s so upset, she can barely manage to get words out. A neighbor resident, L, joins us. “She’s not happy here,” he points out. What is the appropriate response to this? I can plainly see she’s not happy. I can’t think of anything polite so I simply nod and bite my lip.
The side of Mom’s face is black and blue and the greenish tint that comes from a healing bruise. On her first night here she got into a fist fight with another resident. No one saw how it started. Mom touches her face and murmurs, “It still hurts.” L shares his opinion of the resident Mom got into a fight with. “He’s a mean one. Really crude. He asked another resident for oral sex!” Again, I have no idea what the appropriate response is.
Mom is agitated. She points her finger and says, “He was hurting the children!” L says there are no children here. Mom slaps her fist on her leg. “There are too! He was hurting the children so I told him to pull his pants down, and I spanked him. Yes I did.” L tells her that’s not nice. I’m watching the interaction, not sure what to do. “I did!” she yells. I don’t want to witness another fight. I do the only thing I can think of. I change the subject. “Mom, remember when we lived in the big house in Rural Hall? The one with the creek in the back?” “Oh, yes. That was the best house.” “That was the best house! And you found it for us. Ashley and I would play out in the creek, and have so much fun. Remember when we captured turtles and gave them pedicures?” Mom is smiling now. “We would paint their toenails pink then release them back into the woods, confident that we would find them again.” L says he’s leaving. I ramble about any memory I can think of, not stopping talking, inviting her to interject and say, “Oh, yes!” And then, suddenly, she stands up and puts her jacket on. “I’m ready. Let’s go.”
“Where are we going, Mom?” “LORI! GOSH!” She’s exasperated. “It’s time to go to work. C’mon. Let’s go.” And yet again, I fumble for the right words. I’m trying to live in her reality, and she can’t leave the property. “Just a minute, Mom. I need to go to the bathroom.” I stay in there for a few minutes, hoping that Mom will have forgotten that she wants to leave. I come back into the main room and Mom says, “My turn!” and when she comes out she’s raring to go. “C’mon!” I tell her that we’re not going anywhere, and she sits on the bed next to me and cries.
I hug her. “I know, I know.” Ever so quietly, she whimpers, “Please? Please take me home. This isn’t my home. I don’t know these people. Please…”
After this night, and others that were much worse, with screams, and fists, and chases, and physical restraints, and bruises, and drinks (hot and cold) thrown at me, I made the decision to move Mom to memory care. Memory care is sort of a modern day euphemism for Hotel California. You can check out any time you like, but you can never leave. It’s a locked facility about 30 minutes south of here, and when I toured it, it instinctively felt like a home, not an institution. I liked the staff; I placed a deposit.
Yesterday I took artwork, kitchen items, hanging clothes, pictures, linens. Anything I could easily fit in my car. I spent the day cleaning, measuring, hanging artwork and photos, and envisioning where furniture could go. Today we had a plan. A solid plan. I thought.
Movers would show up between noon and 6 pm. My sister, Ashley, along with Mom’s caretaker, would leave the house at noon and go to CVS to have Mom’s TB test read. They would go to lunch at Mom’s favorite restaurant, and then meet me at her Alzheimer’s doctor’s office at 2 pm. After the appointment, I would go to Mom’s new home and finish setting up, so that when Ashley dropped her off tomorrow, everything would be set up. Ashley and Mom would go on an “adventure” and spend the night at a hotel, so that she wouldn’t see the things gone from our home. A dear friend agreed to be on call in case the movers came around the time I needed to go to the doctor’s appointment (they did). When she arrived around 1 pm; I was wiping away tears. With compassion, she asked, “Why are you crying?”
I’ve thought about that question all day.
I’m crying because I tried and it didn’t work.
I’m crying because I’m watching the brain of someone I love deteriorate, slowly.
I’m crying because trying and willpower and enthusiasm and optimism are no match for Alzheimer’s.
I’m crying because I’ve built a life with Mom. A life with challenges, but a life I’m very grateful for that I won’t have anymore.
I’m crying because it pains me to see others in pain, and she’s so tormented by false memories. She thinks Dad is still alive, and he’s left her for another woman, and she’s trying to lure him back.
I’m crying because I’m grieving the loss of my last surviving parent. She’s physically still alive, and yet I feel I’ve lost her.
I’m crying because I wonder if I gave up too early.
I’m crying because it’s all I know how to do right now.
Mom’s headaches have increased in frequency and intensity since Monday, to the point where today she held her head in her hands, bent over, crying. Her physical therapist called me after their session and encouraged me to check her blood pressure. I did, and it was much higher than usual, in the “red” zone when she’s usually squarely in the “green.”
After a telehealth appointment with her general practitioner, a CT scan was ordered, asap. Her doctor asked if I thought she would be still for the imaging, as that was very important. I sighed heavily. “I don’t think so.” Her doctor asked if I would be open to her taking a sedative before the scan, which I was.
I gave Mom the sedative before we left for the hospital, anticipating a fight once we arrived. Instead, Mom walked right in, pointed to a chair, and said she’d wait there while I stood in line to register her. While we waited to be called, Mom leaned over and said, “Daddy’s upstairs, right?” I nodded. Our chairs overlooked a picture window, framing the mountains as the sun was setting, the dusky blush sky a perfect backdrop for the hazy blue mountains.
She laid still for the CT scan. We waited for the results. She talked about how it had been so long since she had seen Daddy, at least three or four days, and she wondered where he was. She asked where we were and I told her. The CT scan came back clear, no sign of a brain bleed or a tumor. We walked back to the car, arm in arm, her mumbling jibberish.
As we ate dinner at home, she wanted to know what we were, churchwise. She asked if we were Methodist or Presbyterian. She asked if we had been at a hospital earlier. She pondered why it had been so long since she had seen Dad. After dinner we ate ice cream, then sat on the couch to watch The Golden Girls. She laced her hand in mine, and so clearly and coherently talked about how difficult it was after Daddy died. That it was hard to watch him suffer, and it was hard on her once he passed. That she loved him so much. She joked that I better find a man. This, this, is the Alzheimer’s Mom that I’ve grown accustomed to. The sweet one.
“Did Daddy ever had any children?”
“Do you know who they were?”
“Well, there was Greg…”
“And then me…”
“Yep! And then Ashley…”
She snuggled closer to me.
And it didn’t even bother me that she didn’t know I was her and Daddy’s child. Her asking was so tender. Her reflections so true. I knew that this behavior would wear off once the sedative did. And that tomorrow we will likely go back to yesterday’s behavior. And I’ll still need to make the difficult decision of what to do next: round the clock caregivers, or moving her to a facility. Or some other option I don’t even know about yet.
And it didn’t matter. I savored the sweetness of the evening, having Alzheimer’s Mom back, even if just for a moment.
“Everything is about you!” she screamed. “You, you, you,” she screeched, slapping me. “I never get anything. You never do anything for me. Outside – look! Nothing’s done!”
The time was 10:47 am, Wednesday, March 2, 2022.
This was the moment that I broke. It has been almost three years since I’ve been her caretaker. The grieving period was sad, but also comforting, a shared experience as we both grieved, and missed, Dad so terribly. I could manage her memory loss with patience. But now. I just stared at her, and as hard as I tried, I couldn’t respond with compassion. This was the mother I knew. I was silent, tears running down my cheeks.
“You are so dumb!” she yelled.
I realized I was holding my breath, so I stood up and walked to the kitchen. I turned the faucet on at full blast and sobbed as quietly as possible.
Her caretaker had called out sick. I just had to make it til 12:45 pm and then I could take her to adult day care. Two hours might have well have been a lifetime.
Kelly answered the phone. “May I please bring her in early? Please?” I was trying to be professional, trying to choke back the sobs. She asked me if I was okay. I heard myself whimper, “I need help. Please.”
I drove Mom to adult day care, and as we walked in, she snarled, “Oh, you’re just dumping me?” As calmly as possible, I responded, “You asked to come to work early today, Mom. That’s why we’re here.” She nodded and walked off.
At pickup time, I walked in and found her sitting beside Kelly, arms crossed, and mouth set in a hard frown. This couldn’t be good.
“Hey, Mom! How’s it going?” I asked, trying to normalize the oh so not normal situation. “They don’t understand! They’re so stupid! My husband is dying!” and she started crying. Kelly gave me the most compassionate look as she said, “She’s had a hard day.” “I’m so sorry. I’m so, so sorry.”
See, I know the wrath that Mom can unleash. It took me years of therapy to work through it. There is no amount of money that would compensate being on the receiving end of that treatment. Kelly assured me it was okay and pleaded for me to take care of myself.
At dinner she pontificated. “I KNOW what I have to do. They’re so stupid! They tried to… Ugh. I told them LEAVE ME ALONE. And they just pointed. I told them if they did it again I’d cut their heads off.”
Normally I just nod along and agree with whatever Mom is saying. Today I couldn’t. I just stared, and I felt hot tears streaming down my cheeks.
She could barely walk. The sleeping pill was taking effect. I tucked her into bed and told her I’d see her in the morning. “Unless I die.” I told her I hoped she didn’t die, because I’d like to spend another day with her.
I returned downstairs to finish up some work. I heard her get out of bed and stumble towards the staircase. I flicked on the lights and told her she needed to go to bed. “YOU ARE SO DUMB! GOD!” I wondered if I would be able to carry her up the stairs if she fell asleep in a chair or on the couch. I don’t think I could. She stumbled into the kitchen, and I returned to my office.
After much too long of a silence, I walked into the kitchen, and found her trying to pour hot tea from the electric kettle into the cookie jar. I took the electric kettle from her and she screamed. I screamed, too. A very loud, very shrill, “GAH!” Will the neighbors hear? I honestly don’t care.
She sat down in a chair in the living room, knees curled up under her nightgown, staring into space. I let her be. Half an hour later, she wandered into my office. “Can I tell you?” “Yes, Mom.” “The children. The boys, the girls. I wanted them to be okay. I’m going upstairs now.”
For the first time since she moved in with me, I wonder:
Is this really the best situation?
Is she safe here?
What if I had been asleep when she tried to descend the stairs in the dark?
If you could, what year would you time travel to and why?
I’d travel back to December 2018, right when Dad was diagnosed with amyloidosis, and we were told he’d likely have 18 months to live (he passed four months later). I’d spend every day with him, talking. We could talk about anything and we’d be happy. In reality, we did talk a lot. Jokes that we had heard, him trying out for a AAA baseball team (and how he never realized his arm could hurt so much after just pitching one day), his journalism career, building the cabin, spirituality, favorite books. But I would do so knowing we only had four months (not 18) and pack as much love as possible into each day.
Or, I’d travel back to July 2015. When I met Mom and Dad in Italy for vacation. And we had so much fun exploring markets, eating gelato, visiting museums, and exploring cathedrals. We watched glass blowers in Murano. And bought antique jewelry. And rode gondolas in Venice. That was the summer we recognized the first signs of Alzheimer’s in Mom.
Maybe I’d travel back to December 2009. I had joined Mom and Dad in Vienna, Austria, to celebrate their 50th wedding anniversary. Each day we walked from Christmas Market to Christmas Market, snow falling gently on us, arm in arm, laughing constantly. There was music everywhere, beautiful string quartets. We ate great food and drank delightful wine. Then we spent Christmas in France with dear friends. It was one of our best vacations together. We were all healthy; we were all happy.
Or maybe I’d travel back to June 1973. We had just moved into our new house in Rural Hall, NC. Dad drove to downtown Winston-Salem each day for work in an old, tattered, dark green Volkswagen Beetle. When it was time for him to return home, I’d walk, often barefoot, through the woods, along the quarter-mile gravel driveway, to wait and watch for him. I’d see the dark green Beetle Bug turn the corner at the end of the street and shimmy towards our driveway. I’d jump up and down, my scrawny arms waving, yelling, “Welcome home!” and he’d stop so that I could get in and ride back down the driveway with him.