“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.
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.
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.
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.
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.
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.
Back in the kitchen, we sprinkled vanilla over the top, then began pouring sweetened condensed milk over the mound of snow.
Then we stirred, and stirred, and stirred.
And then the finished product! Perfection!
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.
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.
In addition to the lowest of lows of caring for someone with Alzheimer’s, there are also some pretty great highs. Like these:
These are the highs I relish.
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.
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.
“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.
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.
LoriLoo 