Oddments

In search of story


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Vagaries in Gestation: November 28.16

SANYO DIGITAL CAMERA

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

 

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Connections: March 29

Vernon Hill - 12 - 2015-10The 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


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Connections: January 27

SANYO DIGITAL CAMERAIf 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


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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.


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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.


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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!


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There comes a time

It had been a very long day, but then most days were. In addition to the usual bounding between Dad and catastrophe, there was a visit to his primary care physician. Dad was unsteady and taking him anywhere was a challenge. The doctor had told us that he was withdrawing some of Dad’s medications and that Dad should eat whatever he wanted, cholesterol be damned. Well, maybe those weren’t his exact words.

Dad and I had finished our usual early dinner and the day was closing into a winter evening as Dad was closing into himself, beginning his night’s restlessness. The phone rang; I took the call in a room away from Dad and was surprised to hear the voice of Dad’s wonderful doctor.

“I wanted to be sure you understood me today,” he said gently.

I assured the doctor I had understood: aggressive treatment was no longer the greater good. Dad’s body had had enough of swimming upstream. He was 84, worn out by dementia he didn’t even realize he had; his cardiovascular system and heart were exhausted, his mind not his own any more. Death wasn’t imminent, but life was, like the winter day, closing.

The doctor gave me permission to stop fighting the disease. It was OK to let go and know that Dad and God would take it from there. It was time.

It didn’t mean the end of medical care for Dad; it meant that medical care had a different purpose. The doctor was not abandoning his friend, as he referred to Dad, but standing with him, acknowledging reality when Dad couldn’t.

There comes a time when time runs out, and it’s all right to put away the clock.