Alzheimer’s

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.

The Mother of My Childhood in Five Acts

/ Lori McLeese / 18 Comments

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.

The Honeymoon Is Over

/ Lori McLeese / 16 Comments

For the past two years, life with Mom has been sweet. Alzheimer’s is such a debilitating disease, and the silver lining was that she was so loving and so sweet.

The honeymoon is over.

It started about a month ago. She insisted she witnessed a child being beheaded. My immediate reaction was, “No! That didn’t happen!” thinking that may reassure her that it was a bad nightmare. Big mistake. She screamed at me, “It did! I saw it!” so then I resorted to, “Oh my goodness. That must have been so terrible, Mom. I’m so sorry you saw that.” And she would cry. And cry. And cry. And retell a strikingly similar story each day. And become just as upset. This would go on for hours. Nothing would console her. I reached out to her doctor and we adjusted her medicine.

After a few weeks, one day she didn’t talk about the child who was beheaded. And I thought to myself, “Thank goodness that phase is over.”

Lordy. We’re now in the “I hate you!” “Get away from me!” “How could you be so mean to me?” phase. She has an uncanny knack of waiting to melt down until I’m on a work call. She storms into my office, crying, screaming, and stomping her feet. I attempt not to look at her and continue with my call, nonplussed. I text her caregiver to please come get her. She screams at her caregiver, shoos her away, and tells her to go away and get out of her house.

I try comforting her. It doesn’t help. I try ignoring her. It doesn’t help. I try talking to her logically. That really doesn’t help. I try agreeing and sympathizing with her. Not helpful.

Tonight she was so angry at me that she threw her purse in the middle of the floor, stormed up the steps, and slammed her bedroom door. I didn’t hear anything for a while, so I went upstairs and found her lying in bed, sobbing. I sat down beside her and she screamed, “Get out!” “Mom, I’m sorry you’re so upset. I love you so much. I brought you your medicine.” “I DON’T NEED MEDICINE! GET OUT!”

She did need her medicine. It’s a sleeping pill so that she sleeps through the night. Otherwise, she wakes up around 2 am, hysterical, and comes into my room.

“GET OUT!” “Mom, I’ll leave as soon as you take your medicine.” “I CAN DO THIS TOO.” “I know you can, Mom. Take your medicine and I’ll leave you alone.” “I SAID, GET OUT!” and she pulled all the covers over her head so she couldn’t see me. “I’m going to sit here until you’re ready to take your medicine.” After a few minutes she said, “FINE. GIVE IT TO ME!” She started to sit up, and I handed her the small pill. With one movement, she tossed the pill over her shoulder as if she were making a wish at a fountain. “THERE!”

I really tried to keep my composure, and I couldn’t help but laughing. “Mom, I’ll bring you another pill. I have a whole bottle. When you’re ready to take it, let me know, and then I’ll leave you alone.” I got another pill and brought it to her. She laid in bed, sobbing. I sat beside her, quietly. Finally, she said, “ok” and took the pill.

I tucked her in, kissed her forehead, and told her I loved her.

“Just go away….” she whimpered.

Buying All The Things…

/ Lori McLeese / 4 Comments

I generally avoid taking Mom to stores in person. There’s the whole COVID thing, but even more importantly, it generally ends in tantrums and fits, which I haven’t figured out how to handle. And this weekend, she wore me down. She was incessant. “Why can’t we buy something?” “Let’s go to the places where they sell things.” “Can we do the thing where we get all the things?”

I needed a dryer clamp to re-attach the vent to the dryer. “Would you like to come to Ace Hardware with me, Mom?” “Oh, yes!” she exclaimed excitedly. She dutifully carried the shopping basket as I browsed dryer clamps. She was intoxicated by the selection of all the things. She ran her hand gingerly over the vents, and pipes, and tapes, mesmerized. After selecting the proper clamp, I indulged her by walking up and down each aisle, even though we didn’t need anything else. She asked if we could buy a couple of plants, one with pink blossoms, another with white. We added them to our basket and checked out.

In the car, she asked where we were going next. I told her home, and she burst into tears. “You promised me colors!” she sobbed. I had no idea what’s she was talking about. “You got some colors. You have pink, and white, and green,” I say, pointing to the plant she’s holding. “Noooooooooo! The purple, and the blue!” I’m flummoxed. “Mom, I don’t understand. Tell me what you mean.” She wails, “I’m so stupid!” “No, Mom, you’re not stupid. Tell me once more what you’d like so that we can go to the right place to get it.” “SHUT UP!”

I have patience. Until I don’t.

“I’m sorry. Did you just tell me to shut up?” She sobs quietly. She eventually tells me she wants to buy clothes.

We enter Target, and she pushes the buggy. We walk up and down aisles. She gazes longingly at the items. We are in the children’s section, and she picks up a sweater set, size 24 months. “So beautiful…” “It is pretty, Mom.” “I want to buy it.” “For who, Mom?” “LORI!” she shouts exasperated. “For me!” “Mom, this is children’s clothing. This won’t fit you. Let’s head over to the adult section.” “LORI! You don’t know what you’re talking about. Of course this will fit.” I place the sweater set back on the rack and we make our way to the adult clothing section. She pouts and sullenly follows me to the women’s clothing section.

“Oh! I like this one! Can I have it? Do we have any money?” “Yes, we have money. That’s really pretty.” I hold it up to her to make sure it will fit. “It looks like it will fit. If you’d like it, you can have it.” “I need three, or four.” “Why don’t you pick out three for today?” We walk through the department, and she lovingly caresses each sweater, exclaiming how beautiful each one is. She chooses three, and I tell her good job, and we’ll check out now. “NOOOOOOOOOO!” she yells and starts crying. People turn their heads and stare. “Mom, you’ve got some beautiful sweaters; let’s pay for them and go home.” This is my first mistake. Thinking that logic will resonate. Still sobbing, she blubbers, “You don’t let me have anything.” Again, I try logic. “Mom, you have three beautiful sweaters. Let’s walk towards the check-out.” “I hate you!” and she stomps her foot.

I want, so badly, to grab her by the arm and drag her to the check-out. And I’m overcome by a sense of deja vu.

I’m four years old, and we’re shopping at the downtown Sears. I’m not sure what I’ve done, but Mom is not happy with me. She grabs my arm, by my teeny tiny bicep, hard, and yanks me through the store. I remember her yelling at me, saying that she would never take me out in public again.

Back in present day, I sigh. I hug Mom and she pushes me away. I start walking towards the front of the store, and she walks a few steps behind me, stopping every so often to look at something. She’ll catch up with me and add something to the cart. When she stops to look at something else, I take it out of the cart and hang it, in the wrong place, in the wrong department, saying a silent apology to the team members working that day. Occasionally, I turn to look and she’s not there, so I backtrack, wondering which department she’s snuck into. After a half hour of this, we make it to the check-out and are on our way home.

We pull up in front of our house and before I can turn off the car, she turns to me, “Can we go shopping?”

Honey, Sweetie

/ Lori McLeese / 8 Comments

Mom has been begging for a dog and cat for several weeks. I thought this was a passing fad. It’s not. Several times a day, she says, “When are we going to get a dog and cat?” She cuts out pictures of dogs and cats from the newspaper and leaves them on my desk. When she asks, I tell her, “Sure. We’ll look for one soon.” All the while hoping she’ll forget about this desire. (Note: I would love to get a dog, and I don’t feel I could successfully take that on right now.)

One of my water aerobics pals suggested a robotic pet. I did some research, and it seemed robotic pets are a popular solution for people with dementia who want an animal. I ordered this cat, and hoped for the best. It arrived today while Mom was at adult day care. I unboxed it, disposed of the box in the recycling, and familiarized myself with the cat. It purrs, it meows, it lifts its paw, and it sheds (really? that’s a feature of a fake pet?).

When we arrived home, I told Mom to sit on the couch and close her eyes because I had a surprise for her. She closed her eyes tightly, and I brought the cat in. I placed it in her lap, and told her to open her eyes. She stroked the cat, smiled, looked at me, and said, “It isn’t real.”

Well, this wasn’t the reaction I was expecting. I smiled and said, “It’s a cat! Don’t you like it?” She petted it, and it purred loudly. “Put it over there.” I wasn’t sure what she was talking about. She took the cat and placed it in front of the fireplace. “That’s where she belongs.”

She sat on the couch and looked at the cat. “Is it real?” “Yep, it’s a cat.” She walked to it and leaned over, “Hey, honey sweetie. How are you baby?” She then looked at me and asked, “Where’s the dog?”

I returned to the website and placed another order…

Mom meeting cat

Time Travel

/ Lori McLeese / 5 Comments

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.

White Lies

/ Lori McLeese / 2 Comments

“Mom, what’s wrong?”

“I wish we had Daddy back.”

“Oh, me too, Mom. Me, too. I miss him so much.”

I hugged her and tears streamed down her face. She sniffed several times and asked for a Kleenex. I brought one to her, she looked up, and asked, “Will you die, too?”

This is where I struggle. Of course I will die. And of course that is not what she wants to hear, nor will it serve any purpose to remind her of this.

I swallow. “No, Mom. I won’t die.”

Mom is assured. Me, not so much.

Magical Moments

/ Lori McLeese / 1 Comment

Early in the morning, Mom crept into my bedroom and crawled into bed beside me.

“Did you look outside?”

“I did, Mom. It’s really pretty out there, isn’t it?”

“It is.”

Silence.

“Let’s go back to my room. It’s prettier in there.”

“Your eyes are closed. How do you know it’s prettier?”

She tugged me out of bed.

In her room, we sat in her bed, propped up against her headboard, looking out over the front yard, the street, the majestical trees, all covered with snow, and soft, clumpy flakes continuing to fall from the sky.

“It’s beautiful, isn’t it?”

“It is, Mom. It is.”

There are hard moments. And there are magical moments like this.

A Life of Love

/ Lori McLeese / Leave a comment

My Bloganuary prompt for today:

What is your favorite photo you’ve ever taken?

It was hard to choose just one. And it was so fun looking through my photo library and reliving past trips and fun moments with friends. But this one is one of my absolute favorites.

Dad and Mom in Italy

This was summer 2015, and I had joined Mom and Dad in Italy for a couple of weeks. It was on this trip that we noticed that something wasn’t quite right with Mom. At first we thought she was joking with us. At restaurants, she would order, and when we were served, she would say, “I didn’t order this. I ordered that,” and she would point to either my or Dad’s plate. We would switch, thinking she was joking. But she wasn’t laughing. When I would get gelato for us, I’d come back with three cones, and she’d insist that she didn’t ask for the flavor I handed her, but one of our cones. And in the evening, we’d talk about our plans for the next day, and less than five minutes later, she’d ask, “What are the plans for tomorrow?”

I took Dad aside and asked if he noticed anything unusual. It was then that he shared she had wandered off while they were in Belgium, and he and the police spent hours looking for her. He was at a loss with what to do. We talked about resources they could access once they were back home. And this picture embodies the life they shared for 60 years, full of love and adoration for each other.