April Showers

So many questions, usually answered with tears.

  • Did I make the right decision?
  • Did I make the wrong decision?
  • Did I act too hastily?
  • Should I have been more patient?
  • Was it a mistake to move in together for a year and a half? Did that make this current move even harder on her?
  • Will Mom ever believe that her current living situation is her home?
  • Will she ever forgive me for moving her “into an old folks’ home”?
  • Will we ever have a visit where it doesn’t end with her begging me to take her home, crying, promising that she’ll be good, and me trying to hold back sobs until I exit the building?
  • Am I seeing my future?

There are moments she seems so lucid, when she tells me she is *not* going to continue living where she is. And there are moments when she cannot string words together in a coherent thought. And most heartbreaking, the frequent moments when she asks me if we can go look for Dad, because she hasn’t seen him for a while, and she’s worried about him. And then she’s angry, so angry, that he’s deserted her. There are no words to comfort her.

Last year, I bought this larger house so that she could surround herself with her furniture, her things, hoping that would make her feel more comfortable. And now those things, those artifacts from her and Dad’s life, mock me when I walk in the door, reminding me that I quickly lost one person I cared for so deeply, and am now slowly losing another.

There are days I want to give it all away, not have the visual reminders. And other days I regret the hastily discarded things after Dad’s death. I’ve been cautioned not to make any major decisions right now, to give myself time to feel the feels and let emotions run their course. More than May flowers, I hope all of these April showers bring some sense of peace when I ponder these questions.

The First Visit

It’s an uncomfortable feeling. I arrive at the exterior door, check through the window to make sure there are no residents prepared to exit, enter a code, slip in, and quickly close the door behind me. I walk down the hallway to Mom’s doorway and knock. I notice another resident on the couch in the living room, halfway between sitting up and laying down, hunched over. There is no answer from Mom’s room, so I crack open the door, and call out. Still nothing. I walk through her apartment and she’s not there. I walk to the common kitchen, no one. I walk closer to the resident on the couch and realize the resident is Mom, curled up in the fetal position, leaning against the arm of the couch, sobbing and shaking. My stomach sinks and I feel a hard lump form in my throat.

“Mom?” I can’t tell if she doesn’t hear me, or if she’s ignoring me. “Mom?” I say a little louder, and place my hand gently on her arm. She jumps and stares at me with a wild look. “Mom, it’s Lori.” She wails louder and starts cry/screaming, “Take me hooooommmmmmme. Please. Please. Take me hooommmmmme. I hate it here.”

I hug her and rock her. She’s gasping for breath. “I hate it here.” I suggest we go outside to sit on the patio; it’s a nice day. I enter the code to exit and we sit, staring at the lawn. We don’t talk. We just sit. After a few moments, she wants to go back inside. I enter the code and the door doesn’t open. I try again. And again. I see a nurse’s aide in the hallway and knock loudly. I learn there is a different code for each door. I’m holding back my own tears.

We go to Mom’s apartment and sit on her bed together. She’s so upset, she can barely manage to get words out. A neighbor resident, L, joins us. “She’s not happy here,” he points out. What is the appropriate response to this? I can plainly see she’s not happy. I can’t think of anything polite so I simply nod and bite my lip.

The side of Mom’s face is black and blue and the greenish tint that comes from a healing bruise. On her first night here she got into a fist fight with another resident. No one saw how it started. Mom touches her face and murmurs, “It still hurts.” L shares his opinion of the resident Mom got into a fight with. “He’s a mean one. Really crude. He asked another resident for oral sex!” Again, I have no idea what the appropriate response is.

Mom is agitated. She points her finger and says, “He was hurting the children!” L says there are no children here. Mom slaps her fist on her leg. “There are too! He was hurting the children so I told him to pull his pants down, and I spanked him. Yes I did.” L tells her that’s not nice. I’m watching the interaction, not sure what to do. “I did!” she yells. I don’t want to witness another fight. I do the only thing I can think of. I change the subject. “Mom, remember when we lived in the big house in Rural Hall? The one with the creek in the back?” “Oh, yes. That was the best house.” “That was the best house! And you found it for us. Ashley and I would play out in the creek, and have so much fun. Remember when we captured turtles and gave them pedicures?” Mom is smiling now. “We would paint their toenails pink then release them back into the woods, confident that we would find them again.” L says he’s leaving. I ramble about any memory I can think of, not stopping talking, inviting her to interject and say, “Oh, yes!” And then, suddenly, she stands up and puts her jacket on. “I’m ready. Let’s go.”

“Where are we going, Mom?” “LORI! GOSH!” She’s exasperated. “It’s time to go to work. C’mon. Let’s go.” And yet again, I fumble for the right words. I’m trying to live in her reality, and she can’t leave the property. “Just a minute, Mom. I need to go to the bathroom.” I stay in there for a few minutes, hoping that Mom will have forgotten that she wants to leave. I come back into the main room and Mom says, “My turn!” and when she comes out she’s raring to go. “C’mon!” I tell her that we’re not going anywhere, and she sits on the bed next to me and cries.

I hug her. “I know, I know.” Ever so quietly, she whimpers, “Please? Please take me home. This isn’t my home. I don’t know these people. Please…”

The Cruelty of Hope

Mom’s headaches have increased in frequency and intensity since Monday, to the point where today she held her head in her hands, bent over, crying. Her physical therapist called me after their session and encouraged me to check her blood pressure. I did, and it was much higher than usual, in the “red” zone when she’s usually squarely in the “green.”

After a telehealth appointment with her general practitioner, a CT scan was ordered, asap. Her doctor asked if I thought she would be still for the imaging, as that was very important. I sighed heavily. “I don’t think so.” Her doctor asked if I would be open to her taking a sedative before the scan, which I was.

I gave Mom the sedative before we left for the hospital, anticipating a fight once we arrived. Instead, Mom walked right in, pointed to a chair, and said she’d wait there while I stood in line to register her. While we waited to be called, Mom leaned over and said, “Daddy’s upstairs, right?” I nodded. Our chairs overlooked a picture window, framing the mountains as the sun was setting, the dusky blush sky a perfect backdrop for the hazy blue mountains.

She laid still for the CT scan. We waited for the results. She talked about how it had been so long since she had seen Daddy, at least three or four days, and she wondered where he was. She asked where we were and I told her. The CT scan came back clear, no sign of a brain bleed or a tumor. We walked back to the car, arm in arm, her mumbling jibberish.

As we ate dinner at home, she wanted to know what we were, churchwise. She asked if we were Methodist or Presbyterian. She asked if we had been at a hospital earlier. She pondered why it had been so long since she had seen Dad. After dinner we ate ice cream, then sat on the couch to watch The Golden Girls. She laced her hand in mine, and so clearly and coherently talked about how difficult it was after Daddy died. That it was hard to watch him suffer, and it was hard on her once he passed. That she loved him so much. She joked that I better find a man. This, this, is the Alzheimer’s Mom that I’ve grown accustomed to. The sweet one.

“Did Daddy ever had any children?”

“Yes.”

“Do you know who they were?”

“Yes.”

“Who?”

“Well, there was Greg…”

“Oh, yes.”

“And then me…”

“You?”

“Yep! And then Ashley…”

She snuggled closer to me.

And it didn’t even bother me that she didn’t know I was her and Daddy’s child. Her asking was so tender. Her reflections so true. I knew that this behavior would wear off once the sedative did. And that tomorrow we will likely go back to yesterday’s behavior. And I’ll still need to make the difficult decision of what to do next: round the clock caregivers, or moving her to a facility. Or some other option I don’t even know about yet.

And it didn’t matter. I savored the sweetness of the evening, having Alzheimer’s Mom back, even if just for a moment.

The Honeymoon Is Over

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…

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

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

I Scream! You Scream! We All Scream for Snow Cream!

With so much fresh, powdery snow, we couldn’t miss the opportunity to make snow cream. It’s part of the magic of snow days in the south. You take what has fallen from the sky and turn it into the most delectable sweet treat ever made.

Secretly, longingly, I hoped that making snow cream would trigger memories for Mom. We had made snow cream during the few big storms of my childhood. Would that be far enough back that she might remember?

As we finished our chicken noodle soup, I asked her if she’d like to do something special. She stared at me, not really comprehending what I was asking. “We’re going to make snow cream!” She continued to stare. “Like ice cream! Sweet and cold!” When she heard “ice cream” she got up. I pointed to her bedroom slippers. “You’ll need to put on shoes that cover all your feet.” She said, “Oh, yes,” and walked into the living room. “They’re by the stairs, Mom.” She started towards the fireplace. I followed her and gently touched her arm. “This way, Mom.” “Oh, yeah, yeah, yeah.”

In the kitchen, I set out what we’d need: a large bowl, a wooden spoon, vanilla, and a can of sweetened condensed milk.

Getting ready to make snow cream

On the back porch we knocked the icy top off of the mound of snow, then began scooping the powdery fluff into a bowl. Always better to have too much than not enough, so I filled it full.

Fresh snow!

Back in the kitchen, we sprinkled vanilla over the top, then began pouring sweetened condensed milk over the mound of snow.

Adding vanilla and sweetened condensed milk

Then we stirred, and stirred, and stirred.

Stirring and stirring and stirring

And then the finished product! Perfection!

A bowl of fresh snow cream
Yum, yum, yum!

Sadly, this didn’t dislodge distant memories for Mom. She kept saying, “This is so good. I’ve never had this before!” And as soon as I washed the bowls, she came into the kitchen, asking for some more of the cold white stuff. All in all, a win.

Getting Older

Today’s Bloganuary prompt:

What is a cause you’re passionate about and why?

There are a few.

Ending mass incarceration in the United States.

Eliminating food insecurity.

And one that I’ve thought about more and more over the past few years: systems to support the aging population in the US. This wasn’t top of mind until I became my Mom’s guardian. And as I have navigated everything on her behalf, I have to wonder how people (especially aging persons with dementia) address this if they don’t have an advocate. I am incredibly grateful that we have resources to make this easier. Before I became her guardian, I was living close by. My father had the foresight to procure long term care insurance that mitigates the financial burden of care. I live in a city with a large retired population which has incredible healthcare resources. And as I’ve navigated this, I’ve noticed that caretaking generally falls to a child or another family member. What happens if there isn’t a child or family member?

It’s not just logistics. What about quality of life? Making sure that there’s a place they can call home. That is safe. That is stimulating. With healthy food. That may have been what assisted living facilities set out to provide when they were conceived. And COVID exposed the limitations of those facilities. One of the most dehabilitating factors for someone with dementia is isolation. And that’s what COVID forced upon folks in assisted living facilities. So. Much. Isolation. I understand they were doing the best they could with the information at hand. The isolation, though, was one of, if not the main, reason I decided to move Mom in with me. And had I known at the time how difficult it would be, I may have thought twice about that decision. But it makes me wonder what will happen when I reach that stage. And what options will be available.

The Highs

In addition to the lowest of lows of caring for someone with Alzheimer’s, there are also some pretty great highs. Like these:

  • I wake her in the morning, gently running my hand over her back. Her eyelids flutter, eventually opening, and she gives me a bug hug. “Today’s going to be a great day!” I exclaim. “Yes!” she replies enthusiastically.
  • We take turns saying the blessing before meals. Actually, I ask her to say the blessing until she says, “It’s your turn!” which is about 1 in every 8 or 9 asks. She says that she’s grateful for the good, and the bad, and then names something amazingly specific (sometimes imagined) which is a great reminder to remember the little things.
  • We listen to classical music while she “journals” (cuts up the newspaper and tapes it into a notebook) and I read or work. Every so often, she’ll look up and say, “This music is just so beautiful.”
  • On our daily walks, she’ll stop and examine a dropped flower or a leaf, turning it over in her hands, then carrying it home, to tape into a notebook and color around it. The flowers and leaves are usually dead, ones I wouldn’t have given a second glance. A reminder to look for the beauty in everything.
  • She hides candy throughout the house. Every so often, she’ll sneak into my office while I’m working and pass me a Hershey’s Nugget or Kiss, with a mischievous grin.
  • In the evening, I’ll ask her if she’d like to go to bed, or watch an episode of The Golden Girls. “Oh, the girls! The girls! I just love them.”
  • I sneeze. She laughs hysterically. Over, and over, and over.
  • She asks me for a dish of ice cream (usually right after she’s finished one). I go into the kitchen, fix a bowl, and when I return and hand it to her, she says with surprise, “Oh! Ice cream! Thank you so much!”

These are the highs I relish.

Stepping Out of My Comfort Zone

Bloganuary prompt (using last week’s prompt that I skipped):

Write about the last time you left your comfort zone.

“C’mon, Mom, it’s time for dinner!”

She wandered around, looking lost. “Should I go upstairs?”

“No, we’ll eat in the dining room.”

“But what about him? He needs to eat.”

“I think he’ll be fine” (no idea who he is).

“My husband will be hungry! I’m going to get him!”

I try not to allow looks of pity and sometimes my face betrays me. My heart was breaking.

Her bottom lip started quivering. “He’s gone, isn’t he?”

“Yes, Mom, he is. I’m so sorry.”

Sobs erupted. She screams, “Why didn’t anyone tell me?”

“Oh, Mom.” I hugged her. “It’s so hard without him, isn’t it?” I held her for several minutes as she sobbed.

She sniffled then said she’d be alright, so I sat in my seat opposite her at the dining room table. We joined hands across the table.

Right before we said the blessing, she looked up and asked, “How long has he been gone?”

“Almost three years, Mom. We were so lucky to be with him as long as we were. He was a great husband and Dad, wasn’t he? This is what I loved about him…”

This is what I’ve been advised to do by her doctors, and my goodness, this is so far out of my comfort zone. Constantly trying to divert the conversation away from Dad’s death, which is one of the very few things she remembers, to other subjects, which she can’t remember. She can’t recall any memories of Dad, other than his death, and when I share memories, the majority of the time she’ll say, “Hm. I don’t remember that.”

Alzheimer’s is such a heartbreaking disease. I’m watching my Mom’s brain die, day by day. It feels like she’s declining so quickly, and her doctors advise me that the disease is progressing slowly. I’m constantly calling on my meditation practice, reminding myself of equanimity, and anicca, and appreciating the moment for what it is, knowing it too, will pass.