My Dementia Diary 33 – Still Water

This morning was unusual. For weeks , the days have started with a cool breeze shaking the trees, forcing me to pull up the zipper on my jacket, our walks beginning with some urgency, a need to get the blood circulating for warmth.

Not so today. This morning, we opened the front door to the immensity of quiet. not a sound, Not a breath of wind. It was as if someone, somehow, had put life on “pause.” 

We walked through this spell of silent grace down to the shore,  finding a sun warmed bench to sit on. The water was absolutely still, not a whisper of waves lapping on the beach. Breathing deeply, I marveled at how peaceful I felt as the endless stress of caring for my wife melted away.

We held hands and savored the bliss of carelessness.

Others, similarly entranced, passed by. Each answered our greetings with soft friendliness. Finally, as we rose to leave, one woman shared with awe,

“It’s so calm!”

Yes, and I so needed it.

tio stib

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My Dementia Diary 32 – Sometimes

Sometimes I find myself thinking everything is the way it used to be, I can see and my wife is an intelligent, rational adult. Sometimes, for a moment, I believe this is true.

Although when I open my eyes, all I see are blobs and blurs, I dream in vivid color and exquisite detail. My dreams are so real, I often awake expecting to be adventuring with my wife again, young and wild and free once more.

It doesn’t work that way.

Sometimes the world inside my head is more appealing than the world  outside.

tio stib

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My Dementia Diary 31 – An Inconvenience

A recent surgery which repaired a hand and left one arm in a plaster cast, has reminded me that some things are much more easily done with two functional paws, including-

tying shoelaces
buttoning jeans
zipping up jackets
cutting up food with a knife and fork
washing dishes
flossing teeth 

Fortunately, this inconvenience will only last two more weeks and then I can stop trying to type with one finger.

Be grateful!

tio stib

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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

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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

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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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