Saturdays

Our Saturdays have a comforting familiarity. Park, ice cream, Hallmark movie. And some days we have interesting tangents. Like today. 

I usually arrive midday. Mom is either in bed, or sitting on the patio staring into space. I step in front of her and call her name, and it takes her a few beats to recognize me. But when she does, it’s the sweetest of sweet feelings. Her eyes light up and she says, “You came!” I know this is a fleeting reaction, and I savor it each Saturday that she still recognizes me. We hug, and I help her get ready for our outing. Sometimes that involves bathing her, sometimes helping her change out of her nightgown, and sometimes reminding her to use the restroom before we depart.

We go to the nearby park, and walk. We used to walk for almost an hour; now our walks are one short loop, about 25 minutes as she slowly, ever so slowly, shuffles. She loves seeing the children playing at the park, and parents are so incredibly generous, encouraging their littles to say hello to Mom. I wish there were a way for me to transmit the eternal gratitude I have for these parents. Thank you for indulging an elderly lady who wants to come close to your child. Thank you for being so incredibly gracious, and encouraging your child to wave or say hello. Thank you for smiling. 

As we finish our walk, I ask Mom if she needs to use the restroom. Usually she says no, and we continue to our next stop, the ice cream parlor. Today, however, she said yes. We walk into the restroom, and she entered the stall. I stand outside the stall, because she doesn’t usually lock the stall, and I don’t want someone to walk in on her. I hear her finish and flush the toilet, and then struggle with the door. Oh, no. She has locked the door. “Mom, can you hear me?” “Yes.” “I want you to slide the silver latch, okay?” Through the narrow crack between the wall and the door, I see she steps back from the door. I reach up over the door and point downwards. “Do you see the latch I’m pointing to?” “Yes.” “Okay, please slide it.” I see her step back and lean against the wall. “Mom?” “Yes.” At this point I kneel on the floor, trying not to gag. My philosophy about public restrooms is to get in and out as quickly as possible. I reach my arm under the door and point up to the latch. “Do you see my hand?” “Yes.” “Okay, touch my hand.” She does. “I want you to move your hand up, up, up, up….” She did, and when she reached the latch, I said, “Okay, now slide the latch.” She stepped back from the door. I wondered what other words I could use to encourage her to slide the latch. I drew a blank. 

I realized I would need to crawl under the door into the stall. I am not a small person. This would mean laying on the floor, of a public bathroom, and shimmying into the stall. I tried not to gag as I laid down on the floor and scootched forward. I inched into the stall and stood up. I slid the latch and Mom said, “Well looka there.” I tried to rid my mind from thinking about what germs were on the bathroom floor. We exited the stall and I helped her wash her hands. 

Mom’s language use has diminished. She’ll start a sentence, and can’t recall the words to express her thoughts. I try to help her, and sometimes it works, and sometimes it makes her more frustrated. Today, when we pulled into the parking lot of the ice cream parlor, she sing-songed, “Ice cream, ice cream, ice cream.” I smiled. I’m so happy that connections are still made.

We returned to her home, and propped up on her bed to watch a Hallmark movie, holding hands with our legs intertwined. Al, her special gentleman friend from across the hall, wandered in. He saw me and smiled. “I wanted to see who was in bed with Sybil!” I laughed, and said it was just me, and he didn’t have any competition. He said he was going home, and would see us later. He ambled across the hall back to his room. 

Vipassana training emphasizes impermanence. The good won’t last forever, and neither will the bad. I try to remember this with each day that I spend with Mom. Don’t get too attached. This is fleeting. And oh my goodness, still how I wish each day could be like this – the recognition, the tenderness, the sweet love. I know it won’t be like this always, and I say a prayer of gratitude. Today was a good day. 

Oh, yes.

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.

Baby Steps

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. 

Me and Mom at the park – living in the moment.

Old Crow Medicine Show

2008. The Fillmore, San Francisco, CA. Old Crow Medicine Show. An amazing concert at one of my favorite venues.

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.

Old Crow Medicine Show at The Salvage Station

June

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.

A Time to Grieve

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.

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. 

And cried. 

And cried. 

And cried. 

I’ve cried until I thought there couldn’t possibly be any more tears inside me and I begin to cry more. 

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.

A Peaceful Afternoon

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?”
“Sure.”

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.”
“Yes, ma’am.”
“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.”
I nodded.
“Could we do that?”
“Yes, I think we can arrange that.”
“Are you sure?”
“Yep.”
And she relaxed. We sat there, sun shining down on us, when she pointed.

“Those are my clothes in the closet.”
“Yep.”
“How’d they get there?”
“I brought them.”
“You did?”
“Yep.”
“Hmmm.”
A few more minutes of silence passed.

“Did you live here?”
“Yep.”
“Hmm. You bought this place?”
I did.”
“Well, that was not a good decision.”
“Okay.”
A few more minutes of silence passed.

“Should we work on your journal together?”
“Yes.”

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.” 

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.