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

Time Travel

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

“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.

A Life of Love

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.

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. 

Happy Halloween!

“We haven’t seen this many children in eons!” 

Mom was in her element. She loves socializing. She loves children. She loves candy. We sat on the porch in rocking chairs, 6 feet away from the small table with a huge bowl of candy on it. As soon as she saw children approaching on the sidewalk (a good 30 feet from where we were sitting), she started gesturing, inviting them to our porch, “Come here! Come here!” 

“How many can I take?” the unicorns, Cruella DeVils, Spidermen, and vampires asked.

“As many as you want, sweetie!” I tried to explain to her that we’d likely get hundreds of children over the course of the evening, so maybe we’d want to limit them to 1 or 2 pieces. “Oh, yes, that’s what I was thinking.” 

The next group of children arrived. “Look at you! Aren’t you just precious! Take as much as you like!” Fists emerged with overflowing handfuls of miniature candy.

It was more important for her to enjoy herself that for us not to run out of candy. Mentally, I started thinking about what else we had in the cupboards. A box or two of granola bars. Some small bags of peanuts. Possibly some hot cocoa packets? If nothing else, I had some one dollar bills we could give out if we ran out of everything else. Do kids use Venmo at Halloween?

The kids would leave and she’d exclaim again, “I don’t know when we’ve seen this many children!” Then she’d laugh and laugh and laugh. 

“We’re having a good day today, aren’t we?” I often say what I want her to believe. 

“I haven’t had this much fun in ages!” Me, too, Mom. Me, too.