LoriLoo

Not Just Yet

October 25, 2023

Alzheimer’s, Asheville Living, family, grief
I gasped when I saw her pinned in the “Geri Chair” in the corner of the kitchen.

Her head bobbled from side to side and her hands struggled to set herself free. “Well, hello there, Momma.” Her head turned to face me, and she smiled ever so slightly. Her eyes were glassy and unfocused. I held her hands and stroked her hair. She grunted unintelligibly.

The staff mentioned that she was in the chair for her safety; she had fallen several times that morning. She wouldn’t stay in her bed, and had not slept the night before. I understood, and asked if I could take her back to her room, and we would lie on the bed together. I would make sure she didn’t get up on her own.

We shuffled to her room and I helped Mom get into her bed. I covered her with a blanket (she’s always cold) and curled up next to her. She continued to mumble, her eyes at half mast. I wrapped my arms around her and tried to prevent my hot tears from falling onto her face. I whispered that everything would be okay. I told her that I was with her, and I loved her dearly. She began to relax, and eventually drifted into sleep. As she snored oh so quietly and oh so daintily, I whispered to her:
- You gave me nickels and dimes for the ice cream man when we lived on Eldorada Road, though I know now those were hard to come by.
- You made me a new dress for school pictures in kindergarten. You let me pick out the wave bending fringe, and even though it didn’t match, you sewed it on anyway. I loved that dress.
- When I fought sleep, you sat with me and put your fingers on my eyelids, holding them closed, encouraging me to give in to sleep.
- You played Duck, Duck, Goose with us at my second grade birthday party in the front yard. I remember thinking that you were the best Mom for playing with us.
- You read stories to me, and allowed me to spend days at the library during the summer, curled up on the floor reading all sorts of books.
- You made sure that I learned how to swim. You were afraid of the water, and wanted to make sure that I never was.
- You allowed me to experiment in the kitchen unsupervised , often making a mess, but also learning what ingredients went together and what did not. Which also allowed me to learn how to clean as I cooked.
- You were so angry when I resigned from my teaching job in NC to move to CA. You eventually came to love visiting CA and I was so happy to share my new home with you.
I felt someone enter the room, and I opened my eyes, expecting to see one of the nurses or Mom’s beau. No one was there. I whispered, “We’re not quite ready to leave yet. Give us one more day.” And squeezed Mom more tightly.
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Confusion and Preparation

October 15, 2023

Alzheimer’s, Asheville Living, family, grief

It’s becoming painful to be around Mom. She’s so confused; my heart breaks for her. She’s so restless. Even on sedatives, she is unmoored. She lays down, she tosses and turns, she gets up after a few minutes, she walks around aimlessly, as though she’s searching. She sees things that I can’t, she reaches into space to grab something that’s not there. She swats at me. She tries to eat my hands when I attempt to feed her. Her words generally don’t make sense to me. I feel so badly that she’s communicating in a way that is coherent to her, and I simply cannot understand. I try different responses. Some land, some don’t, and with the ones that don’t she becomes even more frustrated. Today, as we were on our afternoon drive she started screaming and crying, clutching her stomach. I asked her if she wanted to go home, and she nodded. I turned the car around, and we were back at her residence within 10 minutes. I asked her if she needed to use the bathroom and she nodded, then walked into a closet. I gently lead her to the bathroom and helped her on the toilet. After she finished, she seemed to be better, but nodded when I asked if she was tired. She laid on the bed, curled up, and I sat on the bed next to her, in the curve of her stomach, stroking her hair. She began to relax, and I told her it was okay. She could leave when she’s ready; we’ll be okay. She opened her eyes and cried, “Jerry!” As tears rolled down my face, I continued stroking her hair and asked her if she was ready to see Dad. She nodded, and her eyes closed.

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Stripping and Pills

October 6, 2023

Alzheimer’s, Asheville Living, family, grief
We pulled up to the restaurant. Mom clapped her hands. We’ve been coming here weekly (sometimes more) for the past year and a half. The staff are so incredibly lovely to us, nodding along when Mom utters nonsensical words and smiling at her. As I opened Mom’s car door, she was taking off her sweater. “Hey Mom, whatcha’ doing?” She muttered some incomprehensible syllables. “Let’s put that back on so we can go inside the restaurant.” She continued to wriggle her arm out of her sweater, and I noted she didn’t have anything on underneath. “Are you hot, Mom?” She shook her head. I unbuckled her seat belt and guided her right arm into the arm of her sweater as she wriggled her left arm out. I considered our options.
- I could let her take her sweater off, and we could sit in the car until she was ready to put it on, and then we could enter the restaurant.
- We could go to a fast food drive through, and it wouldn’t matter if she were wearing clothes or not.
- I could appeal to her sense of vanity and tell her how beautiful she is in the sweater.
I went with option 3, and surprisingly it worked. For a moment.

As we sat at the table, waiting for our food to arrive, she wriggled and began to take her sweater off. “Hey there. Let’s leave that on for now, okay?” What could I say that wouldn’t anger her? What could I say that would encourage her to stay clothed, at least while we were at the restaurant?

She stood up and walked to the table behind us where a man, between my age and hers, sat, along with a woman, likely closer to my age. She mumbled gibberish, then leaned in for the kiss. I hugged her tightly and tried to pull her back from kissing the man. She swatted me away. The woman seemed amused; the man, not so much. I led Mom back to our table.

It was time for her dose of antibiotics, and she needed to take it with food. I gave her the pill, and told her to wash it down with tea. I saw her start to chew and said, “No – swallow it.” I could have been speaking Mandarin. Words mean nothing now. She pursed her face, swiped out half the pill, and threw it on the floor. I picked it up and wiped it off. I knew she needed this in order to feel better. She wouldn’t swallow it, though. I picked up a French fry, stuffed the half a pill into it, and handed it to Mom. “Want a French fry? You love French fries.” She ate it, and didn’t spit anything out.

I was grateful.
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Slipping Away

October 4, 2023

Alzheimer’s, Asheville Living, family, grief

She was curled up in a ball on her bed, underneath a heavy quilt, even though the temperature was in the 80’s. I slipped my shoes off, and curled up behind her, my tall body enveloping her short one. She slept, a dainty snore escaping her. I wept, silent hot tears rolling down my cheeks. I try not to cry when I’m with her. But sometimes, it just happens.

She eventually stirred and sat up. She looked at me with bewilderment. I stroked her hair. “Hey, beautiful.” She stared blankly past me.

I helped her put her shoes on and she walked, zombielike, to the car. I helped her into the car, and buckled her in. We went to our favorite bakery. I sat next to her, on the metal outdoor furniture on the deck, feeling the imprint that would render my thighs criss crossed. I broke off a piece of the bran muffin and offered it to her. She ate it, staring into space. I asked her if she wanted some water, and held the cup up to her lips. She took a sip, then waved me away. I tried to offer her another bite of muffin, and she took my hand, as though she were giving me the hand massage that comes standard with a manicure. She then popped each of my fingers, and pulled my hand close to her mouth. She sucked on my middle finger, as though trying to drink from a straw. I watched this with surprise and awe. “Hey, Mom, are you thirsty?” She stared at me blankly. I pulled my hand away gently, and offered her the cup of water. She looked at me quizzically and pushed away my offering. She picked up the bran muffin in its paper wrapper and slowly, methodically, started to tear the paper then try to eat it. I simply watched. When she didn’t find satisfaction in the paper, I offered another bite of muffin. She smacked her lips, much as a baby bird would while waiting for the mama bird to feed them a worm. I put the muffin in her mouth, and she chewed, robotically.

When we got back to her residence, I asked the caregivers if they had given her extra medication that day. I hoped that they had, to explain the zombie like behavior. I hoped that they hadn’t, because I don’t want Mom to live in a state of druggedness. They had. Mom had dropped a resident’s dog earlier. I can’t imagine that she intentionally tried to hurt the dog. She had picked it up, and was holding it tightly. They told her to put it down, so she did. By just dropping her arms and letting it fall to the floor. They got upset with her, she became agitated, they gave her a sedative. I get it. And it makes me sad. One thing I’ve learned throughout this journey is that conflicting feelings can all be true, all at once.

A nurse called me later that evening. Mom had a UTI (urinary tract infection). UTIs can wreak havoc in people with dementia. It adds even more confusion, and increases the likelihood of agitation. I thanked her for letting me know, and said a silent prayer of gratitude that they discovered this quickly and ordered antibiotics.

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Mothering

October 1, 2023

Alzheimer’s, Asheville Living, family, grief

We sat outside, enjoying the crisp fall day. I brought the glass of ice tea to my lips, underestimating how full it was. Tea spilled onto my dress, beading in the folds. As I reached for my napkin, I felt Mom dabbing at the puddles with her folded cloth napkin, muttering, “It’s okay, it’s okay.” She was mothering me.

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The Day Has Come

September 24, 2023

Alzheimer’s, Asheville Living, family, grief

I knew the day would come. I thought I had prepared for it. I thought I would accept it with grace. I thought wrong.

There was no glimmer of recognition when I visited Mom today. She wanted to go out, and I hoped that once we were in the car, and playing her favorite music, things would click into place. “You Are My Sunshine” played. She stared straight ahead. “I’ll Fly Away” came on. No reaction. No toe tapping, no humming along, no singing. “Amazing Grace” played and nothing changed. It’s hard to sing along when hot tears are running down your face. I tried, and I heard myself choking on the words.

We ate at our favorite Sunday spot. Up until now, I’ve been able to piece together the words and phrases she utters and carry on a somewhat coherent conversation. Today, nothing made sense. I nodded, and smiled, and said, “Oh, yes,” while I felt the gulf widen between us. I wanted to scream, “Come back! Don’t leave!” as I watched her retreat into her own world, blank eyes staring forward.

When we entered her residence, she walked towards one of the male residents, and kissed him gently on the cheek, and placed her hand on his neck. I knew this action. This was how she used to kiss Dad. I was both overcome by gratefulness that she still had someone to love (and be loved by), and a deep yearning for Dad, who I continue to miss dearly.

Even though I know it’s not likely, I continue to hope that there may be recognition on a future visit. With Dad, even as he was dying, he knew we were there. I didn’t realize how difficult it would be to physically be with someone, and yet not be with them, at the same time.

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Mountain State Fair

September 17, 2023

Asheville Living

Impromptu outings are the best. Especially when they involve corn dogs, lemonade, funnel cakes, oversized vegetables, animals, and stomach-churning rides.

I thought I liked rides. I think maybe I like some of them. The swings that swung high above the ground at rapid speed were exhilarating. The buckets that swirled and spun and twisted and turned were fun (though a bit nausea inducing. Or maybe it was the corn dog.). The ferris wheel was terrifying.

I was confounded. Why was the seemingly tamest of rides the most fear inducing? I was higher than on any of the other rides, and the most still. It wasn’t a fast ride, it was one that slowly, ever so slowly, rotated, with regular stops for riders to get on and off. We were exposed – the only thing that was keeping us from tumbling to the ground (and to a horrible accident) was a stress-fractured bar (how seriously should I take those cracks?), hopefully locked in place by the nonchalant fair worker. I wanted to take pictures of the fair from above, the dazzling neon lights from high in the sky. I couldn’t open my purse, much less take out my phone, for fear of dropping it. I smiled, I laughed, I persevered.

And then the ride was over.

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“I Don’t Have Any Children”

September 10, 2023

Alzheimer’s, Asheville Living, family, grief

For the most part, I’ve been able to go with the flow when managing Mom’s Alzheimer’s. It doesn’t bother me to hear the same question, multiple times, in a short time period. It doesn’t bother me to answer the same question, multiple times. It doesn’t bother me to help her understand how to use a spoon. Or the toilet. It doesn’t bother me when she’s impatient to do the next thing.

At lunch, we were holding hands and playing a version of patty cake (she likes more physical touch these days), and she was mumbling words and phrases that didn’t make much sense, and I was nodding and saying “yes” and “um hm” and generally acting like I understood what she was trying to communicate, and out of the blue she said, “I don’t have any children.” I know it’s the disease speaking. I know that her life is confined to the present moment. And I felt a lump in my throat, and tears welling up in my eyes.

What more do we desire that to see, and be seen? To be recognized, and to be acknowledged. Daresay, to be loved?

I was determined not to cry. I nodded and said, “No?” And she shook her head. Then, looking into my eyes, she said, “I’m glad you’re here.”

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Precious Moments

August 16, 2023

Alzheimer’s, Asheville Living, family

I make such an effort not to assign judgment to our visits. I don’t want to value our visits as “good” or “bad.” I want to see them as what they are. Spending precious time together.

And it’s so hard to withhold judgment. Today was a good, no a great, visit. She recognized me (maybe) when I arrived. She hugged me and said, “I love you so much.” She cried a bit, somewhat shaken, then asked, “Can we go?” I checked that she had shoes on, her hair was (somewhat) brushed, and nodded yes.

We walked outside, and in the sun, she stood, eyes closed, arms outstretched, and said, “I just love this.” She teaches me perspective. I walk outside and feel the oppressive heat of the south in the summer, magnified by my entrance into menopause. She walks outside and feels freedom and the warmth of the sun. I place myself in her shoes.

I help her into the car and buckle her seatbelt. I connect my iPhone and then start the car. She hears the familiar chords of “You Are My Sunshine” and starts to tap her foot and utter sounds. They aren’t words, per se, but noises to accompany the lyrics. We hold hands as I drive 25 miles per hour around the windy roads to our favorite restaurant.

We’ve been coming here for a year and a half, once or twice a week. The staff know her and affectionately call her “Mama.” They kindly nod and smile when she utters non-sensical phrases and kiss them on the cheek. I almost cry (and sometimes I do) at their kindness.

We order the same thing every time we dine. Two half and half ice teas (half sweet, half unsweet), a burger, cooked medium well, no onions, sliced in half, and a house salad with ranch dressing. Rosemary fries. As we’re waiting, Mom grabs my hands and plays a version of patty-cakes in tune with the music playing on the speakers. I say, “We’re just having the best day,” and she confirms that yes, we are. I feel somewhat of a connection. I see a sparkle in her eyes. I am so grateful. There is a connection, however tenuous, between us.

She utters non-sensical phrases, and I nod my head and respond with non-committal phrases that seem to comfort her. “I don’t know when that will happen.” “I agree.” “I’ll be.” “Would you look at that.” For anyone overhearing our conversation, they would be confused. We don’t make sense. But to Mom, maybe we do.

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Visualizing Diversity at Automattic

July 7, 2023

Uncategorized

This “guest post” was written by one of my incredibly smart co-workers at Automattic. It highlights our company’s diversity through different visual representations (which I love). Thanks, Raúl!

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