Disappointment

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I thought I had everything arranged.  An older gentleman acquaintance would come each Sunday to keep my guy company while I went to my writing group.  He seemed like the perfect fit: a learned yogi with many interesting stories and experiences to share.  We all got along well.  And as he was living on a small income, I would pay him to visit for a couple of hours.

Yes, I could leave my guy alone for three hours, but that brought on feelings of guilt and worry.  I know what he does when he’s left alone: he dozes, watches PBS New Hour, reads a bit, does a crossword puzzle, and scours the kitchen for anything sweet.  Is this so terrible, you ask?  No, not bad for an hour, but three hours is too long for my comfort. His brain, already dulled by dementia, seems to sink deeper.  He’s an extrovert and he thrives on company and activity.

Me, I’m an introvert, as I’ve mentioned in an earlier blog.  I’m also a writer, and writers need to talk, listen, and exchange with other writers.  I carve out the three hours on Sundays for myself, working with three dear writer friends.  We write, we read, and I learn from them, as they are often more informed and literate than I.

Yesterday, disappointment slapped me sideways when the yogi companion let me know he wouldn’t be coming on Sundays anymore.  “It’s too depressing for me,” he said.  “I can’t do it.”

I almost wept on the spot.  Oh, don’t I know how depressing it is to spend my days with someone who used to be lively, alert, with a wide-ranging mind and healthy body!   Where did that person go? I was awash in self-pity.  Those feelings that lie just below the surface came bubbling up: anger, sorrow, frustration.  And envy.  What would it be like to up and say, “I don’t want to do this anymore.” And walk away.

But I can’t.  I won’t.  And so I begin again my search for a Sunday companion.

Compassion and Guilt

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Caregiving 24/7 often feels like a rollercoaster of emotions. The two up there in the title are Big and Frequent for me.  Compassion: How horrible it must be to literally lose one’s mind!  How awful to be so dependent!  How frightening to search for words and not find them!

Reality intervenes.  Is it anxiety or forgetfulness that prompts the persistent questions I get daily: Where are we going? (4 times en route), Do the tulips need water? (three times during breakfast).  Who is coming over?  When are we getting the car back from the mechanic?  I can’t discern whether it’s his anxiety or memory, but–alas!–I do become impatient.

So then comes the guilt. I “should” on myself.  I shouldn’t snap back.  I shouldn’t use that tone of voice.  He can’t help it. I should be kinder, more patient, more forgiving, more COMPASSIONATE, more–more–more.  Give me my hairshirt and lash.

Compassion does come from the outside as well.  Some friends offer visits, outings, understanding, golden ears that just listen to me whine.  But there’s another kind of compassion that isn’t necessarily helpful.  There are folks who want to help by offering ways to fix the problem.  They provide suggestions about herbal supplements and links to websites that tell how to reverse dementia.

I’m ashamed to say that my initial reaction is negative.  You’re asking me to do more than I’m doing already?  I already make weekly rounds with doctors, provide activities and entertainment, meals, transportation–and now I have to watch infomercials and read articles about magic bullets?  My first thought is No, thanks.  

But then I think: What if?  What if the brain tonic helps?  And so off I go into cyberspace, just in case.

If I find a cure, I’ll certainly let you know.

 

 

I – You – We

 

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Once upon a time…

I was “I.” I moved at my unique pace.  I had freedom and choice.  Freedom in the solitary pleasure of introversion.  I could–and did–choose to spend hours or whole days absorbed in my singular pursuits, until my own voice startled me.

My partner came and went, doing his good work, joining me for our mutual interests.  He stayed up late reading after I fell asleep.  I rose in the dark to meditate alone as the dawn peeked in. The weaving of together and alone protected my “I.

The “yous” we were to each other had a rhythm like breath.  You fix the vacuum, I shop, I get the oil changed, you make dinner, you mow the lawn, I call the plumber.

As his memory and management skills began to fade, my “I” became more of an “i.”  A lower case overshadowed by  a weighty WE.  “Are WE going to bed now?”  “What are WE doing today?”  “Are WE going to watch TV or read?”

Nowadays I think for “WE.”  I plan and make meals for two, pack suitcases for two, manage finances for two, choose daily clothing for two.  As others in this situation have said, it’s like caring for a toddler, but without the promise.  The only path is down.

And though I often feel like this:

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here I count the blessings WE do have: good health, loving family and  friends, stimulating activities, and a variety of resources and support.

 

 

In our area, we make use of:

-Ulster County Office for the Aging — 845-340-3456 (caregivers’ support, inexpensive legal assistance, respite care and more)

-Jewish Family Services of Northeaster New York – Albany — 518-482-8856 (counseling, aging in place, transportation and more)

-local Community Center (ping-pong, senior lunches, outings, games days, and more)

-Lifetime Learning Institute SUNY New Paltz — 845-257-2892  lifetime@hawkmail.newpaltz.edu (variety of classes offered in fall and spring semesters)

 

 

Living with a Fading Mind

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Mornings when I wake, I either feel comforted by facing the same routine or irritation and boredom for the same reason.  Policing the choice of clothing: how many days has this shirt been worn?  Did he sleep in his long underwear? Checking up on hygiene: a wet bath towel is proof he really got in the shower.  Cleaning the whisker shavings out of the sink–again.

This is the life of a caregiver.  Spouses, parents, children–all of us can find ourselves in the role.  No matter who is caring for whom, we share so many aspects of the job: the worry about our charges’ well-being, the sorrow at the loss of what used-to-be or what could-have-been.  We suffer tides of rage.  We drown in guilt.  We weep for ourselves and our person.

We carry the work and the sorrow.  Heavy burdens, both.

Groundhog Day is the caregivers’ movie.  The sameness of our days can feel like brewing insanity.  It’s a constant challenge to maintain an unruffled response when a question comes around for the third–or fourth–or seventh time in ten minutes.  “What are we doing today?” “Where are we going?” “What day is it?” “Should I make the bed?–open the curtains?–close the curtains?”

Every day I fish out a recyclable item from the trash can and move it to where it belongs.  Every day I say, “Please take your shoes off and put on your slippers.” Every day.

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Photo by Pixabay on Pexels.com

And yet–and yet–I am so fortunate.  Others like me care for individuals who are oppositional or irrational.  Some are on constant alert because their people are wanderers, or are belligerently determined to drive the car somewhere with no license, or are packing a bag to go on an imagined trip.

My guy is sweet-tempered and cooperative.  He thanks me multiple times for making the most negligible meal, for picking him up from Starbuck’s, for setting out his clothes.  It breaks my cracked heart further, rent apart even more by guilt over his good nature and my inner angry monologue.

 

It all comes down to loss.

 

 

 

For the Love of Fabric

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Gigi on a baby quilt made by me, ca. 2016

Peek into a quilters’ closets and drawers.  You may laugh, or be slightly shocked.  We quilters collect fabric like oenophiles collect rare wines.  Arranged by genre (batik, 30s, ethnicity…) or color, these piles of cloth are our (sometimes guilty) pleasure.  We delight in the colors, the combinations, the patterns.  The potential.

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wedding quilt 

Each part of the quilting process carries its own joys and frustrations.  Joys: choosing colors, arranging pieces and blocks on the design wall, seeing it come together.  Frustrations: running out of fabric or thread, discovering crooked seams, ripping out stitches, adjusting thread tension on the machine.

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Quilters paint with cloth.  Once a quilt is finished, I usually take a photo and then give it away.  Some quilts have a destination before I start them; some claim an owner while I’m quilting.  I keep very few.  At home now I have only five quilts: one in use, two stored away, one I didn’t make, and a baby quilt waiting for a baby boy to be born.

Quilters trade fabric and give it away, too.  Most of the Japanese prints I’m quilting with now arrived by way of a friend’s friend who moved house.  There are other creations for fabric junkies:

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Pillows—

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and a tree skirt, if you know a tree that needs one…

Hidden California

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The landscape on Interstate 5 glows under shafts of light.  A visual feast spreads before me: blond hills dotted with the shadows of grazing cattle, live oaks stark against the rolling slopes.  We drive north through the central valley, toward our first stop at Los Banos.  My rudimentary Spanish tells me there may be hot springs for bathing nearby.  And so it is: we pass a sign just south of the Los Banos exit announcing “Mercey Hot Springs.”

That’s where we go the next morning, taking a long, winding detour through the golden hills and gullies.  Steers lean against the fencing, reaching for the greener grass.  Hidden in a copse of feathery trees, we come upon the place.  (Don’t be fooled by the clothing–it wasn’t that cold!)

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At Mercey Hot Springs, you can rent a cabin or camp, or just stay for the day as we did.  There is no restaurant, but snacks are available at registration.  Towels, too.  We changed into bathing suits and chose the “bathing suits required” option as it is not fenced in for privacy.

The individual tubs are arranged in a circle.  We were advised by a fellow bather to rinse the tub with the mineral water to heat up the metal tub before filling it.

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The day was cool and cloudy, but the water was hot.  Not scalding, but comfortable.  To my right, I was joined by a mother and her daughter who came all the way from Hawaii.

Unlike my hot-tub-loving husband, I do not enjoy soaking idly for hours.  After a half hour or so, I get fidgety and drip away to the mineral-water-fed swimming pool.  This is more to my liking: I can move around and still be in water–88′.  As I grew up with a backyard pool in southern Los Angeles, I love to swim.

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From the tubs and pool, we move to the sauna, sweetly smelling of cedar.  Then, a picnic of Trader Joe’s wraps beside a slow trickling stream lined with agave cacti.

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Revived and relaxed, we press on to the north, after experiencing another hidden wonder of California.

Who Is Listening?

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                   Photo of my sewing chair and stillness.

Who reads this blog?  I’ve been writing it for at least two years.  Lately I’ve been wondering if I should continue.  It began as a site to expand on my books in the Karakesh Chronicles.  I wrote about the different kinds of faeries that appeared in my books.  Then I detoured into other topics.

Many authors write blogs, maintain websites, and have a presence on Instagram and Twitter.  I wonder–when do they have time to write?  Luis Alberto Urrea posts frequently on Facebook. Authors are pressured to have a platform and be highly visible on social media.  In fact, on some applications, there are places for writers to supply this information.

Yesterday I sent out an application to participate in the Hudson Childrens’ Book Festival in May.  I offered to present in schools, doing what I know: talking about writing process and guiding students in creating characters and plots.  I made a point that this would be for individual classes.  The idea of standing on a stage in front of an entire sixth grade (100+ kids) terrifies me.  That is not a writing discussion, but a performance.  Perhaps I’ll work up to that someday, but for now, it’s not a possibility. I don’t believe I’m that entertaining!

I do love writing with kids.  The excitement, the originality, the surprises–it’s addictive.  But this–the blog–tossing out thoughts into the ether and never knowing if anyone is receiving–is unsatisfying.

Are you reading? Listening?  Drop me a comment and let me know.

May all be blessed with health and joy in this new year.