dementia

Sad Time

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Photo by Sachith Hettigodage on Pexels.com

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Step outside myself

Watch the morning unfold

Watch him shuffle to the bathroom

Watch me coach him through the shower:

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Wash your face with soap

Use the bar of soap under your arms

In your crotch, the butt too

Hold out your hand

Here’s shampoo

That’s my towel and

This is yours

Underwear, incontinent pad

Arms up, deodorant underneath

Now brush your teeth

*

He is so grateful.

Thank you, dear.

For trimming my toenails

For shaving my beard.

Thank you, dear.

*

Oh, if only I could say

Thank you, dear God,

For this life of service

Thank you for his gratitude

Thank you for the restrictions

Thank you for the loss

Tell me how to say it.

Teach me how to believe it.

Fear and Longing

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My granddaughters live three states away. I haven’t seen them since January. The enforced separation is causing tears and heartache—on both sides. For me, though, as the aging adult, the longing is confused and aggravated by fear.

I’m close to seventy years old. What if I die before we can be together again? This strange and virulent disease could be the end of me. Other younger folk are often less anxious. Today we ventured out to a D.IY. store to get some needed house supplies. Although most of the customers had on masks, there was an atmosphere of laxity that I found alarming.

I hurried through the store, flinging air filters and bug spray into our cart. On the checkout line, the man in front of us had no mask. I commented on this and pulled back further. My husband, whose dementia blanks out the crisis daily, made a joke about the fellow being a tough guy.

“It’s not funny!” I shouted. I moved our cart to the self-checkout lane and rushed out of the store.

I don’t know if we’ll attempt another shopping trip. I truly felt unsafe, and also angry that others’ cavalier attitudes force me to take risks.

When I asked my doctor about the advisability of visiting the family, he said, “Sure, you can walk with them outdoors.”

“Oh, no, but they live five hours away,” I said.

“Nope.”

If this social isolation lasts months longer, I may reassess the risks versus the emptiness. For now, though, we’re back in the apartment, too far away.

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The Wrong Poem

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I am not wrong. Wrong is not my name.
– writing prompt from June Jordan 

 

An old boyfriend of mine once asked me, “What would be the defining phrase of your life?”

 

 

My name is not wrong.

My name is not good enough.

The pink eraser is there

on top of the pencil,

but if I use it,

I am not good enough.

 

The algebra twists me

into paroxysms of wails

x is unknown

y is imperfect.

I am not A or B, but

my C is wrong, and

I am not good enough.

 

The big father raises his eyebrow

when I say what I know.

He doesn’t like what I know.

He says I can think it

but I can’t say it

because my truth is wrong, and

I am not good enough.

 

The yogi man and his ex-wife

tell me how

to bring back a slackening brain,

to fight the blackening blankness,

with COQ10 and mushroom powder,

exercise and cortex power.

Even if I do all they say, all day,

every day.

I will still be

not good enough.

 

NGE

Where Sorrow Resides

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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

Monkey Mind, Meditation, and Caregiving

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howler monkeys

You’ve heard the expression “monkey mind” when referring to the distracting thoughts that jump like monkeys when one is attempting to be still.  These days, when I sit to meditate, I have an entire troupe of howler monkeys yammering and flinging themselves about in my mind.  I’ve been meditating for a long time, so I know the guidelines: when you notice you’re off the mantra, gently come back to it.

Maybe it was the familiarity of the process, or maybe it was the overflow of emotions, worries, plans, and obligations that have beset me since I’ve become a caregiver.  Whatever the cause, my former simple practice of repeating “Om namah shivaya” (the mantra of Siddha Yoga, translated as “I honor the Light within”) wasn’t working.

A teacher of a class we took introduced me to a different type of meditation/prayer. This method has proved to be helpful for me.  I’m mostly attracted to the feminine aspect of the Great Mystery/Higher Power, so I’ve amended the sentence “Be still and know that I am God” to “Be still and know that I am the Mother and the Light.”  For me, “Mother” encompasses divine love and compassion, while “Light” represents wisdom and clarity.  By offering my mind more to do, I’ve found a way to move those howler monkeys to a distant tree.

Here’s my practice:

I hold my left hand in chin mudra, with thumb and forefinger touching.  The fingers on my right hand track the mantra and prayer by gently pressing my thigh as I silently go through the words, like this:

Inhale: Om namah shivaya

Exhale: Thumb–Be still and know that I am the Mother and the Light.

Inhale: Om namah shivaya

Exhale: Forefinger–Be still and know that I am.

Inhale: Om namah shivaya

Exhale: Middle finger–Be still and know.

Inhale: Om namah shivaya

Exhale: Fourth finger: Be still and feel my presence.

Inhale: Om namah shivaya

Exhale: Pinky–Be grateful.

Note that the mantra can be any word or phrase that has meaning for you and focuses on Spirit. In the midst of full-time caregiving, this process has helped me recapture the deeper calm and solace of meditation.

Do let me know if you try this.  I’m curious to hear if it works for others.

virgen de guadalipe

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.