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.

Night Visitor

You crack the door and shuffle in

Crying hysterically

Ugly crying

Face swollen with red blotches

You crawl into my bed

And snuggle hard, grabbing my hand to your face

Through tears, you sob

He’s dead, isn’t he?

I inhale then whisper

Yes.

Why didn’t anyone tell me?

We were there with him, Mom

We held his hand and told him we loved him

More sobbing.

More sobbing.

More sobbing.

I think you are asleep when

You stumble out of my bed

I’m going back to my room

I see you turn towards the guest bedroom and

Gently guide you back to your room

Where are you taking me?

You yell

Back to your room, Mom

It’s time for bed

A tight hug and you sob

What is wrong with my head? 

Why don’t I know anything?

I tell you it’s okay, tuck you in, return to my room,

and

ugly cry. 

A Stitch in Time

“Really? Really?” She said with tears in her eyes. “You would do that for me?”

“Of course, Mom. I’m happy to.”

The “that” in question was repairing the hem in a pair of pants. 

Mornings generally follow this pattern: I wake up first. I get myself together, make a cuppa tea, start work. I hear Mom wake up. It could be 8:30 am, it could be 10 am. I go upstairs, help her pick out clothes, and start her shower for her, making sure she has a clean washcloth and towel. Once she’s in the shower, I leave, still listening carefully for any loud thumps. 

We were at the picking out clothes stage. There was a pair of pants she wanted to wear, but part of the hem in one leg had come out. She was utterly distraught. Barely awake, she couldn’t seem to grasp the task of getting a needle and thread and repairing the hem. Which is why I offered. 

“You get in the shower, and I’ll have your pants hemmed and ready by the time you get out.”

She hugged me hard and stumbled into the bathroom. 

As I hemmed her pants, I pondered. Why was this the task that moved her? Why was hemming part of one leg of a pair of pants appreciated so much? More than buying a house. More than moving in together. More than going on daily walks. More than eating meals together. More than comforting her when she wakes up at 1 am, or 5 am, crawling into my bed, grieving Dad. 

There often isn’t much logic to our days now. But there is a lot of gratitude. Flowing both ways.

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

She could eat nothing but Chips Ahoy! and ice cream and be perfectly content. She’ll go to the pantry, get a handful of cookies, and on the way back to the living room take a bite of a cookie, set it down, take a bite of another cookie, set it down, and by the time she gets to the couch, she might have one cookie left. Or none. Or she may sit down for a moment then say, “I think I’ll get a cookie” and the process repeats itself. Throughout the day I gather up cookies and put them back in the packaging.

And ice cream. Oh, how she loves ice cream. After every meal she asks for ice cream. As I walk into the kitchen to get it for her she yells, “And a cookie!” She’ll finish the bowl, bring it to me as I’m cleaning up in the kitchen, and say, “I think I’d like some ice cream.” Depending on how much energy I have, I may explain that she’s holding her empty bowl, and has just finished her ice cream, or I may simply dole out another scoop. Given how often she eats ice cream, I make the scoops appear large, yet they are hollow. I pull the ice cream scooper along the top of the carton, and the ice cream forms a large curl. I arrange the scoops so that it appears to be a full bowl of perfectly rounded scoops. I use tiny bowls so that it appears she has a lot.

Last night I walked into the kitchen and found Mom at the counter, scooping out her own ice cream. She didn’t have a tiny bowl, but instead a large coffee mug. And she was packing it in. She scooped almost a third of a carton of ice cream into the mug then walked onto the porch to eat it. The carton was still on the counter; the freezer door open. I tidied up and joined her on the porch. “Is it good?” “Mmmm hmmm,” she replied, staring into space and spooning bite by bite into her mouth, rocking slowly in the dusk.

It was ice cream that alerted me something was wrong. It was summer 2015 and Mom and Dad and I were in Italy. They would send me to the gelato stand to fight the throngs of tourists, while they found a quiet reprieve nearby. I’d get our cones, bring them back, and no matter what flavor Mom had asked for, she would say, “I didn’t order that” and take my cone or cup. At first I thought she was joking with me, even though none of us were laughing. One day I realized she really didn’t remember what she ordered, and took whatever looked best.

It’s somehow easier to deal with when I remember it’s not intentional; it’s how her brain works now. And when I remember to order two cones of the same flavor.

Anything at All!

As we left the store, Mom turned to me and said, “Do you remember when Daddy was dying?”

I nodded. “Yes, I do remember that.”

“Do you remember how he said, ‘You buy her anything she wants. Anything at all.'”

I looked at Mom, stifling a smile. “Who was the her?”

“Me.”

“No, I don’t think I remember that.”

Straight faced, she said, “He did. He said to buy me everything I want.”

With a laugh, I said, “Well, we better get started.”

In Search of a Honky Tonk

Whew. It’s been three months (almost) since we moved to the new house. For three months, I’ve felt as though I’ve simply been trying to survive. And I finally feel like I can take a deep breath without threat of an emergency looming.

The first two and a half months were filled with tears. From Mom. Every. Single. Day. The gut-wrenching, sobbing, face-swelling tears. She hated the new house that she had declared we had to move into. She missed Dad. She missed her friends in Winston-Salem. She didn’t think the house was tall enough, and began plans to build a third floor. She hated the yard. As soon as her caretaker would go to the bathroom during the work day, she would sneak into my office, crying hysterically. Her doctor asked me if perhaps she were pulling at my heartstrings. Perhaps?

Even though Mom has Alzheimer’s, and asks me the same question multiple times in a row, I’ve been hesitant to say anything that could be misleading. In my mind I wondered, “What if this were the one time when her memory worked?” I finally realized that reality is fleeting, and it’s better to say what works in the moment rather than what might be considered the absolute truth.

Recently, she’s created the reality that Dad bought this house for us before he died. That this was where he wanted us to be. I’ve nodded and said, “Yes, he thought we’d be happy here.” And I do believe, if there is a heaven, or if there are souls, that he does believe we would be, or that we are, happy here. Thanks, Dad.

Mom and I spend a lot of time on the front porch in rocking chairs. I’ve had to come to terms that it’s okay not to be productive all the time. It’s been a hard lesson to welcome. We spend hours each evening, just sitting and rocking. Sometimes talking. Sometimes being. As we were sitting, she asked me what time it was. Time is confusing for Mom. I told her it was 5:00. She threw her arms up in the air and shouted, “YES!” I was flabbergasted by this response and asked why she was so excited that it was 5:00. She explained, “After 5:00, we’re allowed to go anywhere!” I nodded, wondering why we couldn’t go wherever we wanted before 5:00. She followed up with, “Do you know of any good honky tonks around here?” I stared at my God-fearing, church-going, stricter-than-all-get-out punishing mother in awe.

“I’m not sure I do, Mom. But I suppose we can find one.”

Chain, Chain, Chain…

“How many days until it happens?” Mom asked this question multiple times a day. And every time she asked it, sometimes only minutes after she had previously asked it, I reminded myself that in her mind this was the first time she was asking. And yet, I still got tired of answering. Because no matter what my answer, her response was, “Why so long? Why can’t we move in today?” And in my head I had to remind myself that even though I feel that we’re moving super quickly (I reached out to a realtor on Dec 28; I’m closing on Feb 22; we’re moving on Feb 23) for Mom there’s only the present.

So we made a paper chain, with each link one day. At first the chain reached from high on the curtain rod close to the floor. And a week later it was to the window sill. And a week later it was high enough that I had to tear off the link because Mom couldn’t reach it.

And this was what I saw today.

And with the increase of Mom’s excitement, I felt more anxiety. There are boxes to be packed! Had I changed my address on everything that needs to be changed? Have I signed up for all the requisite utilities? What have I forgotten? And oh, there are more boxes to be packed…

And with all the anxiety for all the things that have yet to be done, there’s also a palpable excitement. We’ll be making a home that each of us will be able to call ours. We’ll be creating a space that we’ll each love and cherish. And, once again, we’ll each be building our forever home.