2022. Salvage Station, Asheville, NC. Old Crow Medicine Show. Holy wow. This is how this band needs to be seen and heard. On a huge outdoor stage, on a beautiful summer night, watching the sky turn from clear to dusky blue to midnight black, a half moon rising over the river. Enough stage space for hijinks to abound. Enough audience space for singing and smiling and dancing. So grateful for a wonderful night.
June is fireflies.
June is chirping crickets.
June is rocking slowly on the front porch.
June is watching dusk transform to evening to pitch black night.
June is magic.
I’m a little more than halfway through a three month sabbatical from work. This is the second one I’ve taken. The first, I walked the Camino de Santiago in Spain. Walked and walked and walked. Met lovely people who I still remember vividly. Basked in the sun (and snow and rain) and went technology free for months. Three months that changed the direction of my life.
People ask me what I’ve done this time.
I’ve grieved Mom not living here anymore.
I’ve grieved the changes in Mom’s brain.
I’ve grieved Dad’s death.
I’ve grieved pandemic losses.
I’ve grieved deaths of people I know, and people I don’t.
I’ve grieved victims of gun violence. Again. And again. And again.
I’ve screamed. I’ve slept. I’ve been counseled. I’ve written. I’ve cleaned. I’ve clawed at the earth with a pickax until I collapse. I’ve read. I’ve planted seeds. I’ve walked and hiked and swam. And I’ve cried.
I’ve cried until I thought there couldn’t possibly be any more tears inside me and I begin to cry more.
So many questions, usually answered with tears.
- Did I make the right decision?
- Did I make the wrong decision?
- Did I act too hastily?
- Should I have been more patient?
- 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.
I walked in to at least half of her closet strewn across her bed, piles and piles of clothes, layers deep.
“Hey, Mom! What’s going on here?”
“Well, I had to do something.”
“Okie-dokie. Should we hang your clothes up?”
And piece by piece, we hung each sweater, shirt, jacket, and pair of pants on a hanger and placed it back in her closet. With each piece, I’d comment, “Oooh. This one is really pretty.” And she’d respond, “I’ve had that for a hundred years.”
Once the bed was clear of clothing, she motioned for me to sit down next to her.
“I need to talk to you, Lori.”
“Now, the folks here are mighty nice, and they’re gracious, and I don’t have a problem with that, but I’m ready to go back to our little house.”
“Could we do that?”
“Yes, I think we can arrange that.”
“Are you sure?”
And she relaxed. We sat there, sun shining down on us, when she pointed.
“Those are my clothes in the closet.”
“How’d they get there?”
“I brought them.”
A few more minutes of silence passed.
“Did you live here?”
“Hmm. You bought this place?”
“Well, that was not a good decision.”
A few more minutes of silence passed.
“Should we work on your journal together?”
I gathered up her scissors, multiple rolls of tape, newspapers, and a notebook, and we sat side by side on her bed. She held up a page of the newspaper, then started cutting out an article. Or part of an article. Or an ad. Or a picture. She’d carefully place it on the page in her notebook, sometimes right side up and sometimes wrong side up, and I’d hand her a piece of clear tape. We worked like this for an hour or so. Gratefulness washed over me. Here was Mom, thoroughly engrossed in an activity that she enjoyed, and there was no visible anxiety. There was just cutting, and arranging, and taping. No talking; Mom was intent on her project. I leaned over and hugged her tightly.
“I love you, Mom.”
“I love you, too, sweetie.”
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…”
Tonight I walked into an empty house.
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?
- How much longer can I do this?
And I do. not. know.
For the past two years, life with Mom has been sweet. Alzheimer’s is such a debilitating disease, and the silver lining was that she was so loving and so sweet.
The honeymoon is over.
It started about a month ago. She insisted she witnessed a child being beheaded. My immediate reaction was, “No! That didn’t happen!” thinking that may reassure her that it was a bad nightmare. Big mistake. She screamed at me, “It did! I saw it!” so then I resorted to, “Oh my goodness. That must have been so terrible, Mom. I’m so sorry you saw that.” And she would cry. And cry. And cry. And retell a strikingly similar story each day. And become just as upset. This would go on for hours. Nothing would console her. I reached out to her doctor and we adjusted her medicine.
After a few weeks, one day she didn’t talk about the child who was beheaded. And I thought to myself, “Thank goodness that phase is over.”
Lordy. We’re now in the “I hate you!” “Get away from me!” “How could you be so mean to me?” phase. She has an uncanny knack of waiting to melt down until I’m on a work call. She storms into my office, crying, screaming, and stomping her feet. I attempt not to look at her and continue with my call, nonplussed. I text her caregiver to please come get her. She screams at her caregiver, shoos her away, and tells her to go away and get out of her house.
I try comforting her. It doesn’t help. I try ignoring her. It doesn’t help. I try talking to her logically. That really doesn’t help. I try agreeing and sympathizing with her. Not helpful.
Tonight she was so angry at me that she threw her purse in the middle of the floor, stormed up the steps, and slammed her bedroom door. I didn’t hear anything for a while, so I went upstairs and found her lying in bed, sobbing. I sat down beside her and she screamed, “Get out!” “Mom, I’m sorry you’re so upset. I love you so much. I brought you your medicine.” “I DON’T NEED MEDICINE! GET OUT!”
She did need her medicine. It’s a sleeping pill so that she sleeps through the night. Otherwise, she wakes up around 2 am, hysterical, and comes into my room.
“GET OUT!” “Mom, I’ll leave as soon as you take your medicine.” “I CAN DO THIS TOO.” “I know you can, Mom. Take your medicine and I’ll leave you alone.” “I SAID, GET OUT!” and she pulled all the covers over her head so she couldn’t see me. “I’m going to sit here until you’re ready to take your medicine.” After a few minutes she said, “FINE. GIVE IT TO ME!” She started to sit up, and I handed her the small pill. With one movement, she tossed the pill over her shoulder as if she were making a wish at a fountain. “THERE!”
I really tried to keep my composure, and I couldn’t help but laughing. “Mom, I’ll bring you another pill. I have a whole bottle. When you’re ready to take it, let me know, and then I’ll leave you alone.” I got another pill and brought it to her. She laid in bed, sobbing. I sat beside her, quietly. Finally, she said, “ok” and took the pill.
I tucked her in, kissed her forehead, and told her I loved her.
“Just go away….” she whimpered.