My Dementia Diary 72 – Slip Sliding Away

Lately, I’ve felt my life has, in the words of Paul Simon, been “slip sliding away..”

slip sliding away
slip sliding away
you know the nearer your destination
the more you’re slip sliding away

-lyrics from song by Paul Simon

There’s an inevitability about my wife’s deteriorating dementia, only one way this story will end. Sure, we all will die, but the process with her is agonizingly slow.

Yes, I do my best to make the most of the moments when she is happy, when life is simple, when it’s possible to forget what’s really going on. But, then she puts her pants on backwards, asks me where the bathroom is, or asks me if I’m married.

There’s a balance I struggle to find each day, somewhere between grief and joy, the reality that there’s a caregiving job to do and gratefulness for all the blessings of our shared life together.

Some things are “slip, sliding away,” but we can still have a perfect day.

tio stib

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My Dementia Diary 71 – What We Might Have Been

in the blackness of eternal night
I wonder what we might have been

had fate not gulped us whole

what roads would have called us on
what waves swept us to other lands
what mountains echoed with our joy
what babies cooed, what friends cajoled
what rainbows chased
what dreams

had fate not gulped us whole

and yet, in soul’s silence
as I hold her hand so soft and still
I know peace

life lived
though briefly

together

tio stib

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My Dementia Diary 70 – Death by a a Thousand Little Losses

It’s the little things that jar me , that pop the  denial bubble hiding my wife’s deteriorating dementia.

This morning, it was toothpaste.

When I handed her the tube, she didn’t know what to do with it.

“No problem,” I said, and squeezed paste on the brush for her.

Such a simple task, yesterday she’d done this herself. Today, her mind could not sort it out.

The agony is that there are moments, hours, sometimes days, when nothing seems to change, when part of me believes we have somehow escaped dementia’s death by a thousand little losses.

But that bubble will pop again tomorrow when I hand her the tube of toothpaste.

For now, I’ll keep pretending, it’s how I stay sane.

tio stib

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My Dementia Diary 69 – 6501

There are about 6500 spoken languages on Planet Earth.

Based on what I heard come out of my wife’s mouth this morning, I believe there are now 6501.

“Tu mencha ki mo laga pimo meo woo?”

Some might dismiss such an utterance as mindless babble, but as she seemed to be waiting expectantly for an answer, I pondered what I’d just heard.

One possibility is that dementia had restructured her brain’s neural pathways so that she is now communicating telepathically with a life form in a far away galaxy. Following this language logic, I responded-

“Fongu ma blata wo bela vandu urgono!”

I held my breath, hoping my Earthling accent had not spoiled the alien dialect.

She hugged me and turned back to her coloring book.

I smiled. My “of course I love you, dear,” response had gotten through.

Yes, it has been suggested that these strange sounds may not be attempts to communicate with extraterrestrial beings.

dementia may be scrambling my own neural pathways. My retort is-

“Bong atu singu!”

tio stib

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My Dementia Diary 68 – Imaginary People

My wife is spending more and more time in conversations with imaginary people. We’ll be eating at the dining table and she’ll suddenly start talking to her son. As he’s in Spain, I doubt he can hear her. She’ll walk outside and begin babbling with an unseen audience in the garden. Perhaps I’m being presumptive, perhaps she does see the people who are not there. She’ll be sitting at her desk working on a coloring project and I’ll hear her sharing drawings with her mother, who is watching television in Mexico.

At first, these conversations bothered me, feeling like another downward step with her deteriorating dementia. Then, I considered the positive side of such conversations-

First, one can have these conversations whenever one pleases, no waiting for family to call or a neighbor to knock on the door.

Next, by initiating such interactions, one gets to choose the subject of the conversation. And no need to wait until someone finishes their boring monologue before you jump in.

Also, these imaginary people, whether they be a parent, a friend, or a world famous celebrity , are going to listen to you, no matter what.

Equally important, if you don’t like the feedback you’re getting from these folks, you can simply abandon them without feeling rude or guilty. Heck, it’s your imagination.

I think my wife has adopted a perfectly reasonable strategy for dealing with a reality that does not fulfill her needs. She simply creates one that does.

If you don’t like your reality, make a new one. Seems like some wise person has already pointed this out, but please let this be my “ah ha” moment as I’m in need of some self gratification.

Do you think this blog and pretending that imaginary people all over the world care enough about me to listen to my thoughts is a similar alternate reality exercise?

Hey, it’s my delusion and I’m hanging on to it.

tio stib

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My Dementia Diary 67 – Feeling Normal

We have two dear friends, neighbors down the street, who are quite resourceful at finding fun things to do on the cheap. This past week, they asked if we’d like to go to a free noontime concert.

“You bet!”

Friday noon found us in the center of a sunny downtown rooftop garden. comfortably shaded by trees, we sat on the lawn directly in front of the stage. While his wife took mine over to greet a mama duck and her ducklings in a nearby pond, my friend described the setting. 

It was magical, a garden paradise filled with trees and flowers surrounded by towering office buildings and All around us, the buzz of voices as the lawn filled up with other concertgoers.

The wives returned, the tuna sandwiches were passed out, and we munched happily to the delightful sounds of latin jazz. 

For a moment, there was no blindness, no dementia, just us in the midst of happy people enjoying summer music on a glorious day.

Sometimes, it’s just nice to feel normal.

tio stib

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My Dementia Diary 66 – Retreating

For months, we’ve been retreating, letting go, moving on, saying “adios” to activities, friendships, and family events that no longer fit us.

I say “we’ve been retreating,” but, in truth, it’s only me.

 there is usually a moment of realization, a painful awareness that our life no longer matches up with the lives of others. I decide to stop attending a particular gathering because the combination of my blindness and my wife’s diminishing attention span makes it awkward for us to participate. I decide to avoid family get togethers because the adults can’t deal with my babbling wife and the kids find us boring. I stop visiting friends because my wife’s constant need for attention makes conversation with others impossible.

More and more, we are by ourselves in our small world. Yes, we are fortunate that this world is comfortable, safe, and offers us pleasant opportunities to walk amidst beautiful surroundings. We are also fortunate that there are a few warm hearted, compassionate folks who welcome us into their lives. Still, I can’t pretend that I don’t find this retreat process depressing. 

More and More, I feel like I’m backing into the future, spending more time looking behind than ahead, thinking more about all the things we can no longer do, than appreciating the possibilities we still have.

Yes, I have an attitude problem. I am still struggling with letting go of what blindness keeps me from doing and accepting the reality of my wife’s dementia. In dark moments, find comfort in the stories of other bloggers in similar situations and their supportive feedback.

I have survived and grown through many perilous and difficult times and trust these experiences have prepared me for the challenges I now face.

But I’ve never climbed a mountain like this before.

tio stib

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