June 4.23: Coping, but barely

Warning: I am going to talk about my medical history. The reason: it’s HHT Awareness Month, and I’ve been negligent about it the last few years.

The alarms rang for me maybe fifteen years ago in California when I saw all the blood in my mouth.  My dentist said he saw no reason for it, but he should have: telangiectasias in the mouth are easily seen. He didn’t know, so dismissed it.

Fast forward to 2012 in Indiana. My doctor didn’t know either but did not dismiss it; she sent me to an otolaryngologist, who diagnosed HHT. I learned HHT was likely the reason I hemorrhaged after I had my tonsils out when I was little. Seriously?

Hereditary Hemorrhagic Telangiectasia is a genetic blood vessel disorder. I got it from Dad. We never knew that all his nosebleeds — and mine — were a symptom of this thing.

HHT causes malformed blood vessels, small and large, which rupture. If nosebleeds are caused by HHT, they are not “just nosebleeds.” Internal bleeding, anemia, other complications, some life-threatening, are possible.

Many foods and medicines have blood-thinning effects, not great if you have HHT. For me, tuna, grapes, cranberries, walnuts, for instance, mean extra kleenex at the ready.  Melatonin? No way. NSAIDs? Never.

We knew Dad had ischemic bleeds in his brain, and apparently they are associated with vascular dementia. But I’ve come to wonder if his long history of blood thinners caused hemorrhagic bleeds in his brain also, ganging up on him and contributing to his dementia. Like father, like daughter?

Even doctors and dentists are not aware of HHT. Now, dear reader, you are. I’ve done my small part.

 

 

May 21.23: Thursday Doors Writing Challenge #3

It was a lovely August day, and the house was open. Through the kitchen window, I could hear the voices outside where Dad was talking to a neighbor. Dad was 83, but he sounded 20, self-assured and energetic in his conversation. No fumbling for words or any other signs that he was making it up as he went along.

Then he came in and asked me where the bathroom was. He’d lived in that house for over 50 years.

The Black Thing filled the doorway on his way to the bathroom; Dad walked through it. It was always in a doorway, a wanton living sentient void, to remind me there was no way out.  There was no food that didn’t taste like the blackness, no sunshine that wasn’t tainted by it, no voice that wasn’t hollowed by it. Its very silence was discordant.

I made dinner earlier to get food in dad before the Black Thing took him. It curled Dad over his dinner plate, forced him to strip his bed and stuff the pillows in his desk, forced him to dig tablecloths out of the old buffet and arrange them, bedlike, on the dining room floor, forced him to walk and walk and walk and walk. Night after night after night.

It covered Dad’s eyes with nightmares so Dad wouldn’t know where he was, wouldn’t know me, wouldn’t know himself. Walking, walking, driven by the Black Thing. Dad’s face wore the dying. Walking, walking, frail, frightened, angry.

When the anguished nights gave way to exhausted day, the Black Thing resumed its vigil in doorways. Like a bat to a cave. Goading me. Dad knew nothing of the nights, of the faceless thing that made even the humanity of tears impossible.

 

Submitted to Dan Antion’s

Thursday Doors Writing Challenge

with thanks to him for hosting,

and with thanks to Teagan R. Geneviene for the photo.

December 1.20: Coping

Zinnia: thoughts of absent friends

 

Once upon a long-ago 1968, two life paths — mine and Libby’s — crossed in the highly combustible, hilarious, hormone-laden world of a junior/senior high school. She taught music and I was the new English teacher.

We met in the teachers’ workroom in a haze of mimeograph fumes, and quickly established our mutual love of music.  I was enlisted on the spot as official accompanist for her junior-high musical extravaganzas. I do not forget the moment the curtain went up for the ballroom scene in “Die Fledermaus,” with its aluminum foil chandeliers, and the audience exploded into spontaneous applause.

Or when the 8th-grade Josephine ad libbed her lines to the 7th-grade Ralph Rackstraw in “Pinafore” rehearsal.

Or the shivering hours in Libby’s basement as she sewed the angel costumes for “Hansel und Gretel.” Her childhood on a North Dakota farm made her impervious to cold and eventually she kept a blanket just for me because she grew tired of hearing my teeth chatter.

Libby and I had the best time in those bachelor days even though she could never convert me to gin or cats. I held to a firm belief in scotch and catlessness.  But, beyond bachelorhood, many were the years of friendship, many the pastries, many the morning coffees, many the long talks.

I would say now that I am dead to Libby but the fact is that for her today I never lived. She is far into dementia. She was lovely, a world traveler, opera buff, master gardener, idealist, a tolerant, inquisitive, lifelong learner, protective of all life. Cat addict.

She still is all those things; she just doesn’t know it.

I salute her today, her 93rd birthday. I will know for both of us.

 

Connections: October 29.17

Deaf phone line

hard blue chair

what’s the point?

no one’s there

austere right angles

sterile, glistening

rigid vacuum:

no one’s listening.

You may think this

nihilistic

but caregivers know

it’s realistic.

 

One of the reasons I started my blog was to write about caregiving. I return to that subject from time to time although I continually grapple with the related issue of denial. It’s so much easier to deny than to listen because listening requires acknowledging. But denial makes the caregiver’s isolation unimaginably more damaging.

 

With thanks to the S.W. Berg Photo Archives for this expressive, poignant photo.

 

Connections

Vagaries in Gestation: November 28.16

Yesterday I drove to the park and, as always, slowed on the adjacent street, where little wiggly people are unloaded from back seats. A car at the curb had its doors open on the street side, so I stopped and waited.

A man stood at the side of the car, arm outstretched, helping someone out. Not a wiggly little person but a ponderously slow older person. A woman. Bundled warmly against the November day, she held his hand tightly. I caught only a brief glimpse of her but I knew. I knew those blank eyes and that empty face. I knew that slight curl inward. I couldn’t swallow because of the lump in my throat and I couldn’t see because of the tears. It all comes back so quickly.

I walked around the park and so did they. No. They did not walk. She moved her feet in that familiar shuffle, achingly slow, leaning hard on him. His baby steps described patience beyond words. Twice I noticed that they stood in embrace, she apparently clinging to him.

There was a slight wind, causing tears to run down my face. I tasted their salt and was grateful for the release.

Caregiving and dementia change people so I cannot say if he were husband or son, but I think son. I think the husband was at the playground with a little granddaughter, he seeking respite which isn’t because there is no respite from dementia. It is merciless in its constancy and as steely cold as the water in the creek.

I stood over the creek yesterday and thought about the cold water that runs through life and the daunting aloneness of those who stand firm in it.

 

 

 

 

Vagaries in Gestation

 

Connections: March 29

The keeping room

old-fashioned place

where all were held

in homey embrace.

Gathering, warming

by hearth and by heart

not valued for size

but as cozy rampart.

Predictable, safe

filled with the known —

it’s in my head now;

I go there alone.

It isn’t this tidy

compartmentalized

but rather like dreams

unrealized:

those who are now

and those who have been

and things that have rusted

and cracked and worn thin.

Things that I touched

with little girl fingers

kitchens and people

whose cinnamon lingers.

My keeping room holds them

for how long I can’t say

but I hold tight and hope

they won’t fade away.

Thanks again to the S.W. Berg Photo Archives

and its Vernon Hill Gallery.

Connections

Connections: January 27

If you are colorless

like death

parchment shade of yourself

suspended

over winter water

— leering mirror

waggly-lined mockery of the real —

bent ever closer

to the purr of cold,

solitary

  unclothed

    but for frost’s wrap,

    rooted in a clay famine

   thick with indifference,

then

you are caregiver.

Warmth and shelter of Denial

hoarded by others,

yours the endless winter of dementia

never

never

 spring.

Connections

Rules of the game

OK, so caregiving is not a game. But there are rules among caregivers. This I’ve learned. The hard way.

Rule 1. Know the difference between mouth and ear. When the other caregiver needs to vent, use only your ears. It is her/his turn, not yours. No matter what wisdom you have to impart, no matter your own experience: mouth closed, ears open. (This has not come naturally to me.)

Rule 2. Know the moment. How close is that caregiver to breaking? Hear what’s spoken and unspoken. Feel; don’t analyze.

Rule 3. Never say “it’s harder for me!” or “it’s easier for you!” Caregiving is not a competitive sport.

Rule 4. When another caregiver breaks rule #3, do not commit mayhem.

Recently another caregiver broke Rule #3, and I had to work to observe Rule #4. She said to me, “It was different for you! You were used to it!” Really? And exactly how did I get “used to” a father with dementia?

And it was DIFFERENT for me. The clear implication was “easier.” Again: really? How is living with a demented parent easier than anything?

She was not deliberately denigrating my experience. And she is young, just dipping her toe in that big ocean of caregiving; there is much she doesn’t know yet. She was exhausted, frustrated, scared — and sick. I was mindful of all that; I knew the moment. I was, nonetheless, stewing in my caregiver juices.

I know she needed to have her say. And I need to have mine: here it is.

Ears, part 2

It started when I was very young. Both my parents were musicians. When Mom went to choir practice, Dad played records for my brother and me. The “Largo al factotum” was very big on the dad playlist, and we were good at the Figaros. “Peter and the Wolf” was regularly featured. Listening was the game. My ears had a sharp growth spurt.

In kindergarten, I started piano lessons. In sixth grade, organ. Listening stretched from two hands on eighty-eight keys to both feet, manuals, stops, foot pedals. My ears grew muscular.

Piano study continued for about sixteen years, and my ears became Olympian in stature.

One day I discovered I was alone with Mom’s cancer and Dad’s dementia. And I also discovered that most other people did not have ears. They could not — or would not — hear about caregiving.

Meanwhile, I heard: the sounds of caregiving built up within me. They were relentless, soulless sounds, from all the rookeries where razor-beaked anxieties bred: hospitals, doctors’ offices, midnight vigils. I was the trapped, the carrion. I couldn’t get away from it. Suffering, dying, fear and sound. Endless sound. Televisions, loudspeakers, tapes, videos, medical machines, floorboards, plumbing in eternal crescendo.

Do you think I exaggerate? Then you don’t know about caregiving.

I didn’t realize until after the deaths how deep the damage. Sound, especially music, suffocated me. I’d have to get away from it, get out so I could breathe. Or I would focus all my energy on not running, unable to concentrate on anything else.

Caregiving had made sound intolerable, and I couldn’t not listen.

I’m better now but not all right. Ears remember.

GQ Dad

I would argue that Dad was by nature a man of questionable fashion sense. It can be reasonably opined that I inherited this, but “it takes one to know one” strengthens my argument. The Fathers’ Day ties I gave him were likely no help.

Bad ties aside, Dad was obsessed by red. His wardrobe, his walls, his cars, his lawn would have been blazing scarlet and sultry ruby had he his way. Every time Mom bought a black dress, he would observe that it would be much nicer in red. I’m sure he thought her iconic potato salad would have been better with a dousing of red food color.

One fateful Christmas, someone bought Dad a brilliant crimson shirt, and thus was born his favorite Christmas ensemble: red shirt with a painfully green St. Patrick’s Day tie. He wore it annually with pure euphoria and we dove for sunglasses.

Dad usually looked good, though, because Mom governed when it came to clothes. His blacks and beiges and pristine white shirts were her doing. And, protests to the contrary, they were his preference for most occasions.

But after Mom died his daily wardrobe became more expressive of his inner Matisse, and one day he emerged from his bedroom in full bloom: brown tweed trousers and red-plaid flannel shirt. Over the shirt — wait for it — a beige sweater with green and orange polka dots. That became his favored fashion statement his last autumn. Blaming the dementia would be handy but not fully honest.

The world according to Dad was brown tweed with red plaid with green and orange polka dots. His spine was straight, his head high: the proletariat could wear whatever — he rocked the look.

Happy Fathers’ Day to all dads who rock the look!