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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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.