care receivers

Where Sorrow Resides

/ tangledmagic / 4 Comments

sorrow

Years ago I read that sorrow affects the lungs.  The idea remained buried in a back drawer of my mind.  Recently, though, I’ve had cause to unearth this notion while dealing with a persistent health issue.

In December, while vacationing with my husband in California, I caught a bad cold.  Normally I would rest at home and kick such a virus in a few days.  My illness was exacerbated by an upended routine, long days of travel, and demands to be present for West Coast family gatherings during the holidays.

Three days before our flight back to New York, I realized that it was more than a cold.  My chest felt like it was imploding.  At the local urgent care I was given a “Z-pack” for bronchitis.  Things got a little better until the flight home, when the symptoms got worse. Back I went to another urgent care on a Sunday and was given another antibiotic.

Eight weeks later, I was still wheezing and tired, with stuffed sinuses.  The ENT specialist that I visited said I had a sinus infection and–you guessed it–gave me a third round of antibiotics.

The point of this narrative is this: in Traditional Chinese medicine, lung illnesses are connected with grief.

cycle of creation

ottowaholisticwellness.ca

I’m a grieving spouse, having lost the future I’d imagined with a spouse who is no longer the person I married.  Although I keep active and engaged with caregiving and many activities, I live with an underlying river of sadness, that springs up into my eyes often, sometimes with the slightest surprising provocation.

Grief  must be expressed to let it go.  We can’t measure the severity of loss with instruments, but only by how strongly it is felt. Unexpressed grief harms the lungs.  Coupled with the all the other emotions that caregiving can produce (fear, anger, guilt–see above diagram), caregivers’ health may be threatened.

So how do caregivers cope and keep illness at bay?  Exercise, meditation, support groups, Emotional Freedom Technique (EFT)*, time with friends, religious practice: all of these help me stay healthy.

lungs in chinese medicine

 

The website below was enlightening.

https://www.chinesemedicineliving.com/philosophy/the-emotions/grief-the-lungs/

*more about this in another blog

Dog Days and Dementia

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weimar pose

 

I can’t decide if comparing my husband/care-receiver to a dog is funny or pathetic.  However, the similarities between pets’ care and behavior and my guy are hard to dismiss.  Here are some:

  • He shadows me everywhere, wanting to be by my side.
  • He gets anxious when he doesn’t know where I am.
  • He loves to go for car rides.
  • He sneaks food if I’m not watching.
  • He makes messes that I clean up.
  • He barks at other dogs (true).
  • He’s loving and loyal.
  • He’s grateful for my attention.

Many other caregivers, on reading this, will deem me fortunate.  Dementia patients can be cantankerous and ungrateful.  As yet, my dementia dog-man is agreeable and appreciative, which makes the caregiving easier.

When we’re out walking and we see someone with a dog, he says, “I’m glad we don’t have a dog.  They’re so much work.”

I say a silent, “Amen to that!”

tired Irish wolf

 

 

 

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 i 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.

man with luggage on road during sunset

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.