My Dementia Diary 20 – Surrendering

Some goodbyes are more difficult than others. Some are ultimate and final. Youth seldom recognizes such moments. I don’t remember the last time I saw my grandfather. Busy with my seemingly endless life, I just realized one day, I’d never visit with him again.

With age comes perspective, the broader vision of experience, the knowing that a change that has happened signals an ending.

Blindness was such a moment. I knew and deeply felt that my life would never be the same again. I knew that huge pieces of me, the things that had defined me, were gone. yes, this was absolutely mind blowing and left me numb and depressed for months. Eventually, I began to adapt, to re-invent my life. Never once did my wife stop loving me or lose her cheer, even as she began losing her mind.

Now, some years into our altered journey, I wonder about our parallel disabilities. I wonder how being forced to surrender my previous active, get out and go everywhere lifestyle, has enabled me to be a more complete and compassionate partner for my wife as her mental disabilities have deteriorated.

Our mutual disabilities have forced us into a much simpler lifestyle than I’d imagined would ever be our case. Yet, in this simplicity, in this smallness, has come a richness, a deeper appreciation of the details of the world around us, little things we look forward to. Hummingbirds at the feeder. Greetings from neighbors as we walk by. the fragrant scents of Spring flowers. The sounds of children playing in the schoolyard. Roses outside our door.

Surrendering once seemed to signal a finality to good, an ending that no other beginning could replace.

But, indeed, there have come new beginnings, each with its own richness and so the wonder of being continues to amaze me.

tio stib

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The Lost American Porch

I once lived in a small town
in a small house with a front porch
a sheltered space protecting the entry door
a spot where I would hang out
sitting on a chair, sometimes the steps
drink a beer or lemonade
and simply enjoy the world passing by

a horn would honk, a friendly wave
kids would call out as they passed on their bicycles
neighbors walking dogs, hurrying home from work
“Hello!” 
“Good evening!”
“Nice to feel summer again.”
“Yes, aren’t the roses beautiful?”
“How’s your garden?”
“Beans and peas are up.”
“Going fishing Saturday?”
“Yup.”

these words and waves were the gold threads 
that wove a sense of connectedness , a feeling of belonging
through my life, a fabric seen and felt but not recognized in the moment

I’ve since moved, to bigger places, more complicated worlds
houses that now greet the street with cavernous carports
yawning doorways for cars beside small openings seldom used by people
and these places lack porches, no commitment to connect to the outside world
no attempt to simply sit and watch, to hear, to feel the pulse of community

I do miss the lost American porch

I miss the Americans who used to wave and talk as they passed by

tio stib

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My Dementia Diary 19 – Babbling

At times, I’ve heard my young nieces, intent on playing with their dolls, babbling as they travel in imaginary worlds. This is quite normal for girls of their age. Not so for my wife, well into her sixties, who now talks incessantly to no one. She babbles.

If I work to understand what she’s saying, there are fragments of reality woven into larger stories. Mostly, though, her words are simply chatter, nothing that makes any kind of sense.

The good news is that her babbling is happy, sometimes she’s even laughing and whistling as she patters about. I’m quite glad about this because it’s obviously much easier to live with a joyful person than one who is angry and upset.

still, I do think about what is happening to her mind, the continuing deterioration of memory, the further separation from reality. then, I stop. Overthinking our situation does me no good. I’ve found it best to simply appreciate the blessings we still enjoy.

I count joyful babbling as one of those blessings.

tio stib

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Excuses

damn sick, you know, that awful flu
slipped and fell on doggy do
triple booked, what could I do
have you met the new guy, Lew
slipped out to sip a little brew
Giants lost, the Seahawks too
burned the Sunday evening stew
blame it on my low I.Q.
what’s with all the ballyhoo
just what did I promise you

really

what else is new

tio stib
2017, 2018

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My Dementia Diary 17 – Hiding the Cookies

My wife’s mind forgets many things but not cookies. when we enter the grocery store, “cookies?” is the first word off her lips, and she knows exactly where to find them in the bakery. Admittedly, I too have a fondness for such sweets, especially the chocolate chip ones, which is why cookies often find their way into our grocery bag.

The challenge comes when we return home, when we must resist the urge to eat all the sweets at once. I’ve tried rationing them, handing out a small amount each day, but, I soon discovered that the cookies were disappearing faster than my rationing had anticipated. Obviously, they were being eaten at other times. Obviously, my wife’s cookie needs were overriding my desire to limit caloric intake.

I decided to hide the cookie tin. First, I placed it in the cupboard, behind the cereal. The cookies kept disappearing. then, I put the tin on top of the refrigerator, assuming my wife would not see them. A few minutes later, she came up and offered me several. It’s hard to be secretive in a single room apartment.

My latest hiding place is in the oven, an appliance we never use. So far, the cookie stash has remained a secret, and the tin may even last the week. Apparently, the phrase “out of sight, out of mind,” bears some truth.

However, I no longer can blame my wife for the continuing cookie disappearance.

tio stib

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Insomnia

there are moments when
I dream in peace
a mind released to roam
then others when
the clock grinds on
and night becomes a tomb

I lay now in eternal night
awaiting mindless deep
a craving need to somehow get
a decent hour’s sleep

tio stib
2015, 2018

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My Dementia Diary 16 – Good News, Bad News, Where is My Solitude

For years, I dreamed of a partner with whom I could share all of life, the joys and the hardships, someone who would be willing and able to take off on a moment’s notice to places unknown simply because it seemed to be a great idea at the time.

Finally, I was blessed with just this partner, and, for one year, we had the magic life together that I’d always dreamed of.

That was a year of unsurpassed bliss and those memories still bring me smiles. However, as so often happens, our road together took an unexpected turn. I lost my sight and she began losing her mind.

And, so, we’ve adapted.

We no longer drive miles from home, but limit our roaming to walking local walking wanderings. It has gotten to the point that I no longer feel comfortable leaving her alone, and, as I’m her only caregiver, this means we’re together all the time, always. Fortunately, my wife has a naturally cheerful disposition and she’s easily guided into whatever activity we need to be doing, from daily walks to grocery shopping. The biggest challenge is my personality, the fact that, for most of my life, I’ve enjoyed times of solitude.

While I’ve treasured sharing adventures with friends, from sailing trips to hikes to new restaurants, when no one was available, I went off on my own. And I loved it!! As has been often shared by others, solitude is not loneliness, it is the beauty and peace of being alone. I have fond recollections of such solitude times, from solo hikes and sailing trips to simply sitting on a beach at sunset. Quiet moments when I could hear stars talking to each other.

Given my wife’s new need for constant companionship, I am finding new ways to give myself the gift of solitude. As she has the envious ability to fall asleep in seconds, I often listen to those imagined stars deep into the night waiting for drowsiness to creep over my mind. Or, I’ll sit outside in the morning sunshine, letting the sweet scent of nearby Jasmine float through me, recalling other dreams of times gone by.

Solitude is soul food, and, as always, it’s up to me to feed myself.

tio stib

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