grief

Hard

/ Lori McLeese / 2 Comments

“I must not have raised you right. Life is hard. The point of life is not to have fun, but to survive.” And then she hung up.

I was 22, recently graduated from college, and in the first few months of my first public school teaching job. It was so hard. I was determined to provide stimulating, interesting learning experiences for each of the twenty-six children in my third grade classroom in rural North Carolina. I stayed late after school preparing for the next day. I researched, I created sample craft projects, I made instruction sheets for activity centers. I listened to children cry, hurt by real or perceived slights. I noticed bruises and bandaged boo boos. I listened to praise (rarely) and complaints (often) from parents. One night I was overwhelmed by the difficulty of it all. I called my Mom, in tears, saying I just hadn’t realized how hard it would be. Her response? “I must not have raised you right. Life is hard. The point of life is not to have fun, but to survive.” And then she hung up. My roommates were standing nearby, wide-eyed, wondering why I had chosen to call my Mom, of all people. 

I think about that call a lot, Mom. I try so hard to cultivate moments of joy. And I believe you want those moments of joy, too, regardless of what you once told me. 

Joy has taken different forms over the past year. At first, it was:

  • Long walks in the park, commenting on the birds, and the flowers, and the sky
  • Then, walking much shorter distances at the mall, sometimes stopping to purchase something bright and shiny
  • Then, going out to eat, chicken fingers and fries on Saturday, and pizza on Sunday, asking to sit in the same waitress’ sections because they know how you like your hot tea prepared
  • Now, going for drives, without you having the will to eat or the energy to walk

You stare straight forward, eyes half-closed, not seeing. I drive, left hand on the steering wheel, right hand holding yours, our fingers intertwined resting on the corduroy wales of your pants. You absentmindedly trace my fingers, up and down, up and down, not looking, back and forth, back and forth. Every so often I glance to my right, seeing if you’re still awake (you are), seeing if there’s any glimmer of recognition (there isn’t). I play the same playlist every time we get into the car. Occasionally, your fingers will play out the notes on my hand as if you’re playing the piano, or your toes will tap along to the rhythm. After You Are My Sunshine, Amazing Grace, and Take Me Home, Country Roads, you’ll say, “that one, good.” I press the rewind button so that we can hear your favorites again. Sometimes I’ll hear you humming along, or even singing one or two words, small and tinny. I smile and choke back tears.

We have a few routes we drive on, all on windy roads where the maximum speed is 35 mph. You want to be outside, not inside. It doesn’t matter if we talk (we rarely do), or if we drive the same route (we often do). You seem content to simply be. 

It turns out, you were right after all. Life can be hard. 

Four Years

/ Lori McLeese / 2 Comments

Grief is:

  • Sleeping for 11 hours straight and waking up exhausted
  • Eating a box of Girl Scout cookies in one sitting
  • Finding a Christmas gift tag you wrote years ago (to someone else) and not being able to toss it out
  • Crying for days before the anniversary of your death
  • Having conversations with you, asking for advice
  • Doing the NYT Mini and wishing we were solving it together
  • Waffling over the simplest of decisions
  • Working on projects around the house and wishing you were here to give guidance
  • A tower of wet, crumpled Kleenex beside my bedside

It’s been four years since we said goodbye. That moment feels like so long ago, and simultaneously it feels like it was yesterday. I am so grateful for every moment that we spent together, and so sad we don’t have more moments to have in the future. When friends talk about moments with their dads, I feel a pang of jealousy. On days when I need to feel you close by, I drink out of the Wachovia coffee cup that you had when you worked there over 40 years ago. It’s not a great cup, but I find comfort knowing that your hands once held it as I’m holding it now. 

Here are the things I want you to know:

Mom’s health is declining, and I’m keeping my promise to you. I’m taking care of her as well as I can. She rarely remembers anything past the present moment, but I honestly believe she’s happy when we’re together. She loves to eat ice cream, and occasionally I’ll have a cup of butter pecan in memory of you. We ride through the country and listen to the playlist that you and I made together, when she was first diagnosed with Alzheimer’s, and you saw an article that music could help stimulate memories in Alzheimer’s patients. Her favorite songs are Amazing Grace (which she insisted we play twice at your memorial service), Peace in the Valley, and It’s Hard to be Humble. I’m not sure how that last one made the list, but I remember it was one of your favorites, too. We sang along (loudly and out of tune) on the way up to the cabin. Mom still remembers some of the words, which amazes me. We still sing out of tune.

My friends from Bogota were here visiting over the weekend. We had such a good time and I wish they could have stayed longer. They helped me rearrange some furniture so I can get my sewing room set up. I wish you could see the house where I live now (and where Mom lived also). I think you’d really like it. It’s different from the house on Woodward, but has the same cozy feel. This is the first place I’ve lived that you never visited. Although, you’re kind of here; your ashes are in a corner in my office. You were adamant that you wanted to be cremated, but didn’t share what should be done with your ashes. I’m kind of mad about that, Dad. Why didn’t you articulate that last bit? I feel like I should do something, but nothing seems right. So for now, you’re across from my desk. 

It’s finally warming up here in Asheville. I ordered a bunch of gold, pink, and red chrysanthemums to plant in the garden. I so wish you were here to help with the planting. When I think of gardens, I think of the time that you and Mom and Ashley went to the cabin and left me at home. I wanted to be helpful, so I worked in the garden all day. I pulled weeds from in between the rows of vegetables, then decided to “clean up” the wild raspberries. I clipped and clipped and clipped, until I was sure I had cut back all the weeds. When y’all arrived back home, I remember Mom screaming and not speaking to me (for a long time), and you gently requesting that I not work in the garden without your assistance. In my attempt to clean up the vines, I had inadvertently cut back all the new growth and pretty much decimated that year’s crop. You never yelled, which really surprises me now. I did a lot of things that warranted yelling. 

Work’s going well. It’s really busy, and we’ve started traveling again. So far this year I’ve traveled to Vienna, Glasgow, Madrid, Cape Town, London, and Zion, Utah. While I was in Vienna, I walked to the Belvedere Museum, where we went for yours and Mom’s 50th wedding anniversary. I remember how we marveled at the grounds, and delighted in the coldness, with snow all around. And stood in awe for what seemed like an eternity, examining every aspect of Klimt’s paintings, as others passed by. That was a magical day, wasn’t it?

I miss you, Dad. Even though we had 50 years together, I wish it were longer. I really miss you.

Sad

/ Lori McLeese / Leave a comment

I only knew him for eight months, and yet it felt like a lifetime. He lived across the hall from Mom. He and Mom immediately took a liking to each other. When I arrived to visit, they would be sitting in the living room area, cuddled close, holding hands. The first few visits, I wasn’t sure whether to simply leave, and not disturb them (they seemed so happy together), or engage with both of them. 

I would sit with both of them until Mom said she was ready to leave, and we would traipse on our adventure. Sometimes she expected him to come with us, and I would gently explain that he would stay at the facility, and we would head out. I looked forward to seeing him each time I arrived. I asked him how he was doing, and what a highlight of the day was. When I arrived during meal times, it warmed my heart to walk in on he and Mom holding hands at the dinner table. 

I arrived today and his door was closed. 

As I walked towards Mom’s room, a staff member let me know he passed earlier this morning. Tears sprang to my eyes, a lump settled in my throat, and I felt heavy all over. I shouldn’t have been surprised. This is the next step at these facilities. And, yet. 

Mom and I went to the park. We walked, we sat on benches. We didn’t speak. As we sat, we held hands, and we each cried. I asked Mom if she was sad, and as tears rans down her face, she said, “No.” I squeezed her hand and even though I didn’t voice it, I acknowledged I was sad. So very, very sad. Sad for the loss of the person who I had looked forward to visiting as much as Mom. Sad for his daughters, knowing what it feels like to lose a father. Sad for Mom, who even if she can’t verbalize it, will miss sitting with him and holding hands. And sad for me, knowing that a similar loss is in my future. 

Just One More Day

/ Lori McLeese / 6 Comments

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. 

Looking at a waterfall

Oh, yes.

/ Lori McLeese / 2 Comments

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

/ Lori McLeese / 17 Comments

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.

April Showers

/ Lori McLeese / 9 Comments

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

/ Lori McLeese / 14 Comments

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

/ Lori McLeese / 30 Comments

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

/ Lori McLeese / 6 Comments

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.