April Showers

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.

The First Visit

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…”

Crying

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.

The Cruelty of Hope

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?”

“Yes.”

“Do you know who they were?”

“Yes.”

“Who?”

“Well, there was Greg…”

“Oh, yes.”

“And then me…”

“You?”

“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.

The Mother of My Childhood in Five Acts

Act I

“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.

Act II

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.

Act III

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.

Act IV

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.”

ACT V

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.

Time Travel

Today’s Bloganuary prompt:

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.

Confident we were beating the odds

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.

In a gondola in Venice

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.

In Paris, celebrating their 50th wedding anniversary

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.

And we’d still have a lifetime together.

Night Visitor

You crack the door and shuffle in

Crying hysterically

Ugly crying

Face swollen with red blotches

You crawl into my bed

And snuggle hard, grabbing my hand to your face

Through tears, you sob

He’s dead, isn’t he?

I inhale then whisper

Yes.

Why didn’t anyone tell me?

We were there with him, Mom

We held his hand and told him we loved him

More sobbing.

More sobbing.

More sobbing.

I think you are asleep when

You stumble out of my bed

I’m going back to my room

I see you turn towards the guest bedroom and

Gently guide you back to your room

Where are you taking me?

You yell

Back to your room, Mom

It’s time for bed

A tight hug and you sob

What is wrong with my head? 

Why don’t I know anything?

I tell you it’s okay, tuck you in, return to my room,

and

ugly cry. 

Learning to Love Pilot Pens

I prefer Sharpie extra fine point pens. I had drained my last two and still had 300+ postcards to write. I’ve avoided stores since March, and didn’t have the luxury of time to order some online.

I had ordered the box of Pilot Precise V5 pens for Dad. He was in one of his extended stays in the hospital, and still taking care of business as though he wasn’t going through daily dialysis treatments and weekly chemotherapy. He asked me to bring yellow legal pads and Pilot pens from home – those were his tools of choice. There was only one Pilot pen at the house and the local Staples was out of them. I ordered a box of them on Amazon and had them delivered the next day. He used one from the box of twelve before he passed.

That box sits in my office. I never cared for Pilot pens. They explode on planes into an inky mess. That was important at one time in my life. I generally like a thicker line; the Pilot’s are razor thin. The box has sat in my basket of writing materials – highlighters, markers, pens, Sharpies – since last May. Each time I glance at it I fondly remember Dad’s preferences, but I’ve never opened the box.

Until now. I took out a pen and began writing the message on the postcard. It was surprisingly perfect. The fine line allowed me to write the entire message without crowding. I thought of Dad with each postcard I wrote, and how if he were still alive, we’d be writing the postcards together. Voting was so important to him. When I lived in California, he called me every voting day to ask if I had voted (I had). He volunteered to ensure everyone could vote. Our last trip together was to Montgomery, Alabama, where, in his declining health, he insisted on walking across the Edmund Pettus bridge in Selma. It was a cold October day, and we had to stop every few feet for him to rest and catch his breath. And he was so happy.

And last night I finished the postcards. Five hundred to voters in Georgia, encouraging them to vote. Written in my hand, with Dad’s pen. A labor of love.

Happy Birthday, Mom

“…Happy birthday to yooooooooouuuuuuuuuu!” I sang over the phone.

There was silence.

“Mom?”

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.”

“Mine? Really?”

“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.”

“Mine? Really?”

“Really!” and I laughed.

“How old am I?”

“79.”

“Really?”

“Really.”

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!”

Mom and I, masked up, outside my house, on her birthday.

August

Katydids, day and night, chirping back and forth, back and forth, occasional soloist, an intoxicating rhythm.

Warm evenings that hug you as you step outside.

Endless hours on the porch swing: reading, thinking, crying, being.

Ripe tomatoes, fresh from the vine, still warm from the afternoon sun, sliced thick and carefully placed on Wonder Bread with just a smidge of Duke’s mayonnaise and several shakes of salt.

Okra blossoms, the softish of yellow, opening up in the warmth and humidity.

A cool breeze, causing a momentary shiver, a harbinger of fall weather that will be upon us soon.

Dad’s birthday. Remembering him and the gifts he shared. Missing him.