My Dementia Diary 75 – Sleepless in Benicia

We’ve entered a new phase in our caregiving adventure, the part where my healthy, energetic demented wife, who buzzes around tirelessly during the day, now sleeps a few hours in the evening, then buzzes around, and up and down, all night too.

The problem is that she used to sleep soundly all night, and this quiet time was when I rested after hours of caregiving. Now, when I’ve finally drifted off to dreamland, I’m suddenly prodded awake and hear a voice in my ear demanding repeatedly,

“Help me!”

And she really does need help. She’s cold, or afraid, or can’t remember where the bathroom is, and once there, what to do next. So I get up, but not with a smile and cheerful “sure thing.” More like the growl of an angry bear awakened prematurely from hibernation.

Unfortunately, my 2 a.m. growling sends my wife into an emotional tailspin requiring at least an hour of patient calm talk and hugs to successfully guide her through the required bathroom procedure and back to bed again. realizing that this process isn’t working for either of us, I’ve decided to adopt a strategy used in my wilder years when crewing on long distance sailboat races.

These journeys lasted for days and so the crew broke up responsibilities into shifts, called watches, when members were either on or off duty. For example, “A” Watch might be on duty from midnight until four a.m., then “B” Watch came on from four until eight A.m.. Yes, it was tough to force myself awake and out of my warm sleeping bag cocoon when I heard the call, “B Watch on deck!” but I was part of a team and I had a responsibility to fulfill. Complaining wasn’t going to change that.

I’m on another long distance race, caregiving for a wife with dementia. There are two shifts, “D” Watch for day, and “D” Watch for dark. Yes, I know the two shifts have the same name, but as this boat only has a caregiving crew of one, I’ve decided not to confuse myself. When I lie down to sleep at night, I repeat “D Watch on deck!” as a reminder not to growl at my wife when she will certainly wake me later.

As our circumstances change, I continue to adapt, as does my wife. Apparently, she decided that prodding awake a hibernating bear was producing undesirable results, and so has adopted a new strategy. She carefully fulls the covers off the bed, leaving me naked and exposed to the cool night air. When I reach reflexively to pull the covers up and don’t find them, I rise up to search. This is when I hear the voice nearby,

”Help me!”

Damn clever, hard to get mad at such cunning, even at 2 a.m.. 

“D Watch on deck!”

tio stib

You might also enjoy: Life Journey Poems & Prose, My Dementia Diary

 

If, by Rudyard Kipling

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute    With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!

Rudyard Kipling, 1895

Source: A Choice of Kipling’s Verse (1943)

When I’m down and feeling sorry for myself, “If” is one of the poems I return to for inspiration. Here are YouTube links to great readings of this poem, the first  by Holly Musgrove, the second by Sir Michael Caine-

Insert video link  to Holly Musgrove 

Insert video link to Sir Michael Caine

Life is a gift and a responsibility. Let’s make the most of it!

Tio Stib

Is There Anything Sweeter?

once
my life was a never ending to do list
every minute, every hour, every day
riding the nowhere train
always something to be done
another meeting, another deadline, another promise to keep

the notion of a nap was a faraway fantasy

then

I jumped off-

now

today’s calendar is blank
an empty page
uncluttered, unfettered, unpromised
the delicious bliss of nothingness

what to do on this sumptuously lazy afternoon

the easy chair beckons
a deep breath, a sigh, a shuttering of eyes

happy memory movies play across my mind

is there anything sweeter than an afternoon nap?

tio stib

You might also enjoy: Paddling a Submarine vs. Living an Authentic Life, Life Journey Poems & Prose

Shape Shifting

the mirror of life stares back at me
a history of those times once free
the many men I’d tried to be
the many worlds I’d longed to see
so many new realities
I lived in hopes of finding me

some were good and some were bad
there were happy times and sad
joyful moments and some quite mad
questing for the dreams I had

some lasted days, some only hours
some grew from seeds to lovely flowers
but then the moment finally came
when each went up in spirit’s flame

was I born a vagabond
to never settle down for long
to never truly quite belong
heart pulled on by distant song

lovers, friends, and passersby
I’ve known them all
said my goodbyes
but now, as I face the end
I wonder if I’ll fly again

the caterpillar exists to eat
the pupa then goes off to sleep
and in its sacred, silky place
transforms into a different face

and so I build my new cocoon
as life within me starts to swoon
in hopes that with the coming moon
I will stretch my wings once more
and fly away to distant shores

so begins my every day
shape shifting in the cosmic play

tio stib
2016, 2018, 2019

You might also enjoy: Paddling a Submarine vs. Living an Authentic Life, A Friend Passes

My Dementia Diary 56 – Dealing with Resentment

“Tis the season of returning Spring vacationees, folks coming back from school breaks and family outings, eager to share the stories of their adventures. I force myself to smile and say, “how nice.” But it’s easy to be resentful.

Sure, cross country skiing through pristine trails in the mountains, drinking margaritas at sunset on a Hawaiian beach, or visiting the the wonderful museums in Washington, D.C., sounds like fun. 

If you’re not blind and caring for a wife with dementia.

Sour grapes? Totally, which is why I work hard not to fall into the resentment trap.

After all, how many people get up in the morning with money in the bank, no debt, and food in the refrigerator? How many people go for a leisurely walk each morning in a comfortable climate through a safe and friendly small town, past sweet smelling flowers and singing birds, and listen to the gentle lap of waves on a beach?

Our adventures may not be as grand and exciting as the returning vacationees, but  ours are no less delightful.

I’m better off being grateful for what we have, than resenting what we don’t.

tio stib

You might also enjoy: My Dementia Diary 53 – The Walk to Paradise Garden, My Dementia Diary

 

Symphony vs. Stanza

beginning with merely four notes
Beethoven created an immortal symphony
a musical poem with voices numbering
over two dozen instruments

surrounded by the sound of genius
I bounce between inspired and humbled
trying to write a decent stanza

tio stib

You might also enjoy: Lumpy Gravy, Life Journey Poems & Prose

Weeding Words

what makes a word a weed?

makes me suddenly
yank it out
toss it from my poetic garden

I must admit it’s never logic
nothing rational
just pure and perfect whim

it sounds odd
it looks strange
it simply doesn’t fit
it’s a weed
goodbye

and so, to fill the gaping hole
I plant another seed
and watch new life erupt

listen
to how it gabs with neighbors

hope
that this communion of sound and sight and meaning
will sate the artist’s appetite for perfectio

tio stib

You might also enjoy: My Garden of Words, Life Journey Poems & Prose