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Dementia: Laugh or Cry?

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Sometimes caregiving for a person with dementia becomes so difficult and absurd that the only possible response is— laugh.

Yesterday, I was cleaning out files.  The box of paper to be recycled was overflowing.  My husband wandered upstairs to check in. 

“Can I do anything to help you?” he asked, as he often does.  (I am blessed with a sweet-tempered, cooperative demented person, not like some caregivers who deal with belligerence.)

“Well, yes,” I answered.  “I need a large garbage bag for these papers.”

“Where are the bags?” he asked.  (Are you paying attention?  Most spouses would know where to find the garbage bags.)

I told him, “In the cabinet to the left of the sink.  They’re in a box under the medium sized bags.”  I illustrated the size spreading my arms.  “About this big.”

He turned to go on his errand.  Stopped.  “What am I getting?”

“A large garbage bag.”

“Where are they?”

I told him again. (By this time, I’m already thinking I should go get the bag myself.  But he wants so badly to be helpful.)

He made little grunts as he went downstairs–his arthritic knees complaining.

He was gone a while.  I moved on to thinning out the notes pinned to my bulletin board.

He came back holding—

three packages of snacks!!

Chip Ahoys.  Cheddar rice cakes.  Fig Newtons.

“Is this what you wanted?” he asked.

I looked at the snacks.  I looked at his face.  This dear man, who tries so hard, who vehemently denies his condition. (“I don’t believe it,” he says.)

What could I do?  I laughed and hugged him hard and long.

Then I took the snacks and went downstairs to get the garbage bag.

Caregiving is challenging. That’s why I value my caregiver group.  We Zoom twice a month.  These are the women who understand.  Who often can offer resources to assist with a problem. 

Photo by Magda Ehlers on Pexels.com

Here are two excellent resources for caregivers:

Ulster County Office for the Aging  845-340-3456

1003 Development Court, Kingston, NY 12401

Alzheimer’s Association

800-272-3900

www.alz.org

Everything I Cannot Bear Is Here

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                        inspired by Letter Home by Pamela Alexander

Everything I cannot bear is here:

1) Clutter: half-filled cardboard boxes, labeled: kitchen, art supplies, obsolete electronics, books, books, books

2) Too much company but no help

3) Stupid stuff that we keep but never use: last decade’s prescription glasses, your mother’s junk jewelry, Spanish pesos in a cloth bag, adapter plugs from Southeast Asia

4) Disorder: desk strewn with papers, notes, a motion light needing batteries

5) Unfinished projects on the sewing machine, on the daybed, on the laptop

6) Fear of icy driveways, isolation, power outages, falling, wrong choices

Musings on Silence and Hearing Loss

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Exactly ten years ago, I gave in to hearing aids.  At the time, the main reason was that I would be working with adult teachers of writing during the summer.  I knew from experience that adults were often shy about reading their work aloud. Without technological help, I would miss their muttered words. 

            Anticipating this trouble, I went to a local hearing aid center and invested in hearing aids.  These devices are expensive.  I pulled out my credit card because I was weary of straining to hear.

            Now, a decade later, my hearing has deteriorated.  It’s not a matter of increasing the volume anymore.  The actual words themselves are often unintelligible.  This is typical of aging ears.  The high sounds required for hearing consonants are no longer detectable.  Even if there is no other impediment, such as ambient noise, I still can’t make out the words. With this new problem, I was depending more and more on reading speech and facial expressions.  Then—enter COVID-19 and face masks.

            The impact of social distancing and face masks on seniors is a hot topic among those of us in our “golden years.”  The masks muffle voices and cover up the mouth that I watch for cues. Facial expressions are limited to forehead and eyes.  Often, I get tired of asking the speaker to repeat. I just keep nodding my head.

            For me, losing the clarity of sound is sad, and sometimes it worries me.  I mourn that I no longer hear the subtle night sounds.  Without my hearing aids, I can’t hear the owls call at night, or raindrops outside the window.  What if someone rings the doorbell?  What if there is an emergency—someone screaming for help?  I would sleep on, hearing only the low, continuous shooshing of my tinnitus.

            Coincidentally, this afternoon I heard a Ted Talk on public radio.  The speaker, Rebecca Knill, was a woman who had been born profoundly deaf, and had eventually, in 2003, received cochlear implants.  She spoke about how much she enjoys silence.  She looks forward to coming home after work and “unplugging” her ears.  “Complete silence is very addictive,” she says.

            Thinking about how silence is for me, I recalled this poem by Leonard Cohen:

            Gift

            You tell me that silence

            is nearer to peace than poems

            but if for my gift

            I brought you silence

            (for I know silence)

            you would say

            This is not silence

            this is another poem

            and you would hand it back to me.

            I’m not quite sure how this kind of silence relates to physiological deafness.  Maybe it’s about the choice.  Knill chooses silence by unplugging herself.  There are times I’d like to hear when I can’t.  But there are also times I choose and prefer silence.  However, my experience of silence is not the same as the silence of the profoundly deaf.  My “silence” is more like listening to a white noise machine, due to the tinnitus. 

One thing I know for sure: the corona virus has impacted my ability to hear and my interactions with others.  Just one more COVID consequence.

What Were You Thinking?

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“What were you thinking?” he said.

And I sprang a memory leak.

All those times he accused me in public.

“Why are you wearing that?”

“That’s not how to paint a wall.”

“What were you thinking?” he said.

And I told him.

A bench there.

A shoe shelf.

A place for coats.

“What were you thinking?” he said.

Again.

In front of the others.

Three times is not a question.

“What were you thinking?”

Unlocked the door between us

that has kept the peace

all these years since.

An open door for memories

to rush in.

That old familiar cringe.

“What were you thinking?”

woke me angry at 2:36 a.m.

But I am not in then,

I am in now.

And in this now,

I speak up loud today.

I say I won’t.

I say you can’t.

I say no.

No.

Math, Patterns, and Quilts

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This morning, I happened upon this video on Youtube. Generally, I am not mathematically inclined, but this discussion of infinite patterns fascinated me. Some of the language went way over my head, however, I loved how the golden mean (1.618…) appeared in the patterns. The golden mean is the proportion that shows up in famous works of art.

I am a quilter and quilters work with patterns. Most often, we sew together simple geometric shapes like squares, triangles, and rectangles to create larger designs. Circles and curves are trickier, and I’ve only attempted one quilt that involved those.

The underlying connections in the world, the spirals of shells and leaves, the snow crystals, the frost on windows, delight me when their structures are revealed.

The video about infinite patterns got me wondering if I could cut a template for dart and kite shapes, and make a quilt with an infinite pattern. This might be a recipe for insanity. I’ll think about it.

My most recent quilt: a chain.

As We Turn Toward the Light

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As we turn toward the light

dreams drift away.

Mothers and fathers

so vivid in voice and gesture

return to the shadows.

As we turn toward the light

our senses awaken

to sleep-scented sheets.

Dawn slides from charcoal

to mauve to lilac.

As we turn toward the light,

clouds blush.

Our fingers curl, anticipate,

regret.

Branches etch an eggshell sky.

The square space encloses.

As we turn toward the light,

vision narrows to a point.

The wide, fulsome dark

of dreams and possibilities

retreats.

The hourglass flips.

Vacuum Outrage

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Three years ago, we got a dog.  A little white dog.  A dog who shed.  In anticipation of white hair everywhere, I bought a fancy hand held vacuum (aka Dustbuster).  Alas, the dog moved on.  However, the vacuum remained as one of my favorite appliances.

This particular vacuum was powerful.  It was rechargeable, too.  We used it a lot: great for stairs and corners and crumbs under the table.  After three years, though, the filter was battered and raggedy, so I ordered new ones that fit the Black and Decker model we had.  I replaced the old filter with the new, and chucked the old one as it was too worn to keep.

The vacuum started acting up.  We’d turn it on, it would run for 30 seconds, and turn off.  Turn it on again, and it would work for maybe 4 seconds, and turn off.  Was it the new filter?

I went online to the Black and Decker website and had a chat with someone at Support. 

If the vacuum is less than two years old, we might replace it, she typed.  Do you have the receipt? 

I might, I answered, but it would be in the file cabinet in the storage unit.  I’d have to look. But I’m pretty sure it’s more than three years old.

The batteries only work for three or four years, she added. 

Can I get a new battery? I asked. 

No, they’re not replaceable, she wrote.

So what am I supposed to do? I was beginning to steam.

You’d have to buy a new unit.

Now I was truly outraged.

You do realize how ridiculous this is? I banged out on my keyboard.  I’m supposed to throw this thing away so it sits in a landfill for a million years, because it’s made with a non-replaceable battery?

I’m sorry, she typed.  I understand.

We signed off.

So all the people who bought hand held cordless vacuums with rechargeable batteries in 2017 can expect them to die soon.  I keep picturing the county landfill piled high with dead vacuums.  So wasteful.  It’s infuriating.  I’m sticking to vacuums with cords from now on.

Meanwhile, do I really throw out this dead vacuum?

Hudson Valley Literary Connection

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In my family, there is a book that is as significant as a Bible.  It is The Melendy Family by Elizabeth Enright, first published in 1941.  Before I was born, my sister, Jan, was the first child to snuggle next to our mother as she read aloud the adventures of the four Melendy children: Mona (girl, 14), Rush (boy, 12), Randy (girl,10), and Oliver (6). 

            As Jan remembers, she burst into tears when our mother finished reading the last paragraph.  Jan was so distraught that Mom turned back to the first chapter and started the book again.

            “It would have to rain today,” said Rush, lying flat on his back in front of the fire.  “On a Saturday.  Certainly. Naturally.  Of course.  What else would you expect?  Good weather is for Monday Tuesday Wednesday Thursday Friday; and rain’s for Saturday and Sunday, and Christmas vacation and Easter.”

            For me, that first line is more evocative than the March’s “Christmas won’t be Christmas without any presents.”

            Mom loved reading aloud, so I got the Melendys next.  She was sad when I became an independent reader and wanted to read on my own.  My cousin, Patty, only two months older, was also a Melendy lover.  Together we acted out Melendy stories in our fantasy play.  I know I read the book at least ten times before I turned eleven. Years later, I read The Melendy Family to my daughter.  She has continued the tradition, reading the book to her two girls.

            The Melendy Family actually contains three smaller books: The Saturdays, The Four-Story Mistake, and Then There Were Five.  In The Saturdays, the Melendys are living in New York City during the beginning of World War II.  Mr. Melendy works for the government in some unspecified capacity.  In the first chapter of this book, the children decide to pool their allowances so that each child can do something special on his or her Saturday. 

            It amazes me now, that eighty years ago, a ten-year-old child, Randy, was allowed to wander around New York City alone.  Eventually, though, it is decided that the children should all go out together.

            The Four-Story Mistake begins with the family moving upstate.  I have wondered many times whether the Melendy’s relocation to a quirky house near a small Hudson Valley village drew me to live in a similar place. 

            I was pregnant with my second child when we landed at my husband’s family farm.  The Melendys had a brook on their property.  I had the Wallkill River below the house.  Later, after a couple of moves, I bought a house with a nameless creek in the backyard.  There, my daughter met up with a luna moth, echoing Oliver’s infatuation with the very same creature.

            For the past few days, I’ve been rereading The Melendy Family.  It’s a joy to reconnect with the book, but also a revelation.  Enright is a fine author.  Her prose is clean and lyrical, and she knows children.  For example, here is Rush getting ready for his Saturday adventure:

            After lunch, Rush had to hurry.  Randy came in as he was furiously combing his hair and trying to make it lie flat. 

            “What have you put on it now?” asked Randy, sniffing curiously.

            “On what? My hair?  Oh, some of Mona’s face cream,” grinned Rush.  “I thought maybe it would make it straight.  But I guess it won’t.”

            “Mona will kill you if she finds out.  You’d better go before she gets a chance to smell you.”

            I have often thought that, when I’m quite senile, I will confuse my own stories and family with the Melendys.  Without a doubt, author Elizabeth Enright and The Melendy Family shaped me as a writer for children.

Tea

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If I could weep,

I would make saltwater tea for you,

foolish, fat man,

full of bluster and lies.

Today I am beyond tears, but others aren’t.

Here, have a cup of tears wept

for the grandmas felled by COVID,

for George Floyd,

for immigrant children

without parents,

for Iowa’s farmers,

for the coral reefs,

the glaciers,

the burned coastline.

How many cups can you drink?