My Dementia Diary 22 – I’m Taking a Shower!

“I’m taking a shower,” she squealed with delight as my wife scampered past and into the bathroom. 

Her joy in anticipation, the sheer radiance of her being left me speechless.

I was filled with the exuberant thrill of being alive that only children can experience. I was overwhelmed by the knowing that the woman who I had married was no longer here. She would never be here again, replaced now by a beautiful child being led to bathe because she no longer remembered to do so herself.

I heard music playing in the background, John Denver singing-

“Sweet, sweet surrender, live, live without care. Like a fish in the water, like a bird in the air.” ”

I cried.

There are times when I am absolutely certain there is a power, a force of being, a love beyond understanding that binds all life in Oneness.

Namaste’

tio stib

You might also enjoy: My Dementia Diary 21-As Good As It Gets, My dementia Diary

My dementia Diary 21 – As Good As It Gets

We’ve just come back from a month in Mexico, a time of surviving myriad family dilemmas rather than any sort of vacation. Upon returning to what we call “home” in our little town at the mouth of the Sacramento River, I’d collapsed, exhausted, into bed, and it was twelve hours later before I pushed myself up to greet a new day. We went for a morning walk.

I was immediately struck by how simple and pleasant life was in this Small American town. There were no buses honking at us, no train horns blaring, no threat of being kidnapped or robbed, no foul smells from open sewers, no garbage to sort through in an endless Mexican obstacle course for the disabled. Instead, there were sidewalks without potholes, stoplights where cars halted for pedestrians, singing birds and plants and flowers everywhere. And I could smell the sea air.

We sat on a favorite bench on the waterfront and felt the sea breeze caress our faces, hearing the lap of small waves on the rocky shore. The fronds of a palm tree swished the air above us. I thought back on the past month, the turmoil and seemingly endless days and nights, the world where I felt so alone and lost.

We went so that my wife could spend time with family. we went because I’m not sure we’ll ever go back again. They all noticed how her mind had deteriorated. They all heard her babbling, understood that she is less and less able to connect with reality. And that was good. There is no more hiding from the truth. Someone they all love dearly is slipping away.

And so that time was good. And so, my wife and I found ourselves sitting on a bench in the warm sun, surrounded by tranquility, and she put her hand in mine and said,

“I love you.”

I squeezed her hand and thought, this is as good as it gets.

tio stib

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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

You might also enjoy: My Dementia Diary 19-Babbling, My Dementia Diary

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

You might also enjoy: Finding Home, Let’s Voyage Into the New American House

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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My Dementia Diary 18 – The last Posole’ Party

this past weekend, my wife and I had a posole’ party for friends and neighbors. Posole’ is a traditional Mexican soup served for special occasions and we’ve hosted such gatherings many times. When we first started doing this, my wife would prepare the posole’ from a recipe she’d learned from her mom. As her mind has deteriorated, I’ve picked up more and more of the process until, now, I’m the cook, and my wife the assistant.

Part of the challenge is procuring groceries, a process requiring us to walk downhill to the store and lug the needed items back up the hill. There is always a second trip because I always forget something. I put these efforts down to healthy exercise. The larger difficulty is emotional and mental, staying patient and caring as my wife becomes more and more anxious about the coming event, asking the same questions again and again. Who’s coming? When are they coming? Why are they coming? Who’s coming?…

As much as she enjoys the thought of company, she is also fearful that someone is going to take her things, so she begins to hide and cover them up. Still, we got through this and by mid afternoon the posole’ is simmering on the stove, our home filled with the sumptuous aroma of good things cooking. My wife is excited but needs hugs and assurance that all is well. 

Guests eventually arrive amidst smiles and laughter and all gather around to share a delicious meal and the opportunity to connect with each other again. My wife is happy, basking in all the love of the moment. Yet, I notice that she is not able to enter into conversation, most topics are too confusing for her. She retreats to the kitchen to do dishes, babbling joyfully to herself.

The evening winds down, friends depart, my wife and I hug, feeling good for the party’s success, but too tired to clean up after it. 

As I sat sipping tea the following morning while my wife engaged in her favorite pastime, adult coloring books, I reflected. yes, the previous night’s event had gone wonderfully well and it had been a great gathering. My wife had enjoyed it. Yet, I was beat. Certainly, the effort had been worth it, but would I ever want to do it again? perhaps it’s time to quit on a high note.

Time will tell.

tio stib

You might also enjoy: My Dementia Diary 17 – Hiding the Cookies, My Dementia Diary

 

Lumpy Gravy, thoughts on writing Well

I’m working on the rewrite of a chapter in a new book and in spite of hours of effort, when I pause to listen to what I’ve written, it sounds like lumpy gravy.

Yes, I realize that gravy doesn’t talk, sing, or make any other noise, but it still seems the perfect metaphor for my imperfect words. In case you’re not familiar with gravy and, in particular, lumpy gravy, a brief description-

Gravy is a sauce made from cooked meat juices, stock, and other ingredients. One ingredient is flour, which is used to thicken the sauce. When the flour is added incorrectly, the result is lumpy gravy, little balls of unmixed flour in the sauce, a culinary no-no. Like good writing, I believe creating good gravy, a sumptuously smooth sauce, is a combination of rigorous practicality and delicate art.

My own experience is that lumpy gravy usually results from hurrying, compromising time and care because of impatience, setting an unrealistic timeline for creating something that simply cannot be rushed. There is a proper order and way to add and mix ingredients. don’t do this and you get lumps.

what are the lumps in my writing? Words and phrases that don’t sound right, feel out of place, don’t fit the desired style, don’t truly support the theme. Adverbs and adjectives that were easy to insert but, upon reflection, don’t add anything. 

What I write seldom comes out smooth and lump free the first time. Admittedly, I rarely succeed at creating lump free gravy either. In cooking, there are two ways to fix this, stir or whisk much more, or, something few will admit to, strain the gravy through a sieve to remove the lumps. 

This is what rewriting is all about, the writer’s process of removing the lumps from his work through careful consideration, in my case, listening as I can’t see what I’ve written. Often I brainstorm words, sentences, even paragraphs. with the magic power of today’s word processing technology and my text reader friend, Alex voiceOver, I can quickly try and listen to many options, until I hear something that is smooth and feels right. And on I move to the next paragraph.

Ultimately, I’m the cook in my word kitchen and I know, that unless what I’ve written passes my taste test, unless I’ve taken the time, done the work, to make perfect, lump free, gravy, those words can’t leave the kitchen.

tio stib

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