My Dementia Diary 73 – Sex, Fishing, and Other Goodbyes

Don’t it always seem to go
that you don’t know what you’ve got ’til it’s gone

Joni Mitchell, “Big Yellow Taxi”

As I listened to Joni sing about paving paradise, I realized I’ve recently lost two big things in my life.

Sex and fishing.

Fishing used to be my soul food, what I craved when life went sideways, dreams were slipping away, or I just needed a break from the human race. My typical fishing trip was an impetuous decision to get out of town, followed by tossing rod, clothes, and snacks into the car and heading out. I had some trusted spots and a mental list of obscure places on the map that had possibilities. I was often several miles down the road before a clear direction became obvious. Location really didn’t matter much, I just wanted to be standing alone in a stream, feeling the sun’s warmth on my face, filling my nostrils with the invigorating air of wildness, casting a fly towards some trophy fish fantasy.

One of the many blessings of our marriage is that my wife found fishing intoxicating too. I remember her excited squeals when she caught her first trout and her delighted giggles as she released it and watched it dart away. I remember looking past her at the backdrop of golden aspen leaves dancing in an azure sky, on a glorious fall day. I remember thinking this is as good as it gets.

Blindness ended such impetuous outings. In time, I found a guide who took the pair of us down a favorite river in his drift boat. It felt great to be on the water again, but I can’t pretend it was anything like before. Still, we enjoyed floating through a quiet world on a beautiful day, trying to wake fish who didn’t want to play. The tranquility was shattered when dementia struck and my wife’s mind melted down. She had to get out of the boat. Words could not calm her and the guide rowed us to shore.

We haven’t been fishing since.

Then there’s sex. We’ve been wonderful, passionate lovers, always open, always eager to please each other. With us, it just happens, a kiss, a touch, a fond embrace and love unfolds. But, recently, I noticed that, in spite of these triggers, nothing else was happening. The woman who once loved to play sexually was now a child who just wanted to be cared for. Dementia had stolen another part of the woman I love and the life we shared together.

My blindness has put such losses in perspective. I’d never expected to lose my sight and the experience was devastating. But I survived and, with the help of friends, learned to explore and appreciate all those things in life that can’t be seen. I also learned that things we treasure can disappear in an instant.

Do I miss sex? Heck yes, and I also miss my wife’s killer guacamole. But these things are not coming back so I need to be grateful for what we do have. She still loves to kiss and hug and she’s very good at it. She still makes my day on our walks when she rushes up to coo and smile at every baby we meet. She still holds my hand as we sit on our favorite bench on the beach and share the feelings of living in a beautiful world.

And fishing? Another tough goodbye, but the fly fishing rod that sat on a shelf by the door for three years waiting in vain to be taken away on another impetuous adventure is now in the hands of my new son-in-law who has a a matching passion. I expect some marvelous stories will be coming my way soon.

In case you’re a Joni Mitchell fan, here’s a link to “Big Yellow Taxi.”

tio stib

You might also enjoy: This Child Who Once Was Woman, My Dementia Diary

 

My Dementia Diary 26 – Over the Rainbow

Some years ago, I was listening to the radio and the announcer said he’d just heard the most amazing voice and he had to share it. The voice was that of Israel Kamakawiwo’ole, an Hawaiian giant known as “Iz” to his many fans. I listened to his rendition of “Somewhere Over the Rainbow” and “It’s a Beautiful World” and cried. I felt like I was hearing Heaven singing to me. 

I often turn to music for solace and inspiration and count among my many blessings my collection of musical artist friends.

Here’s Iz singing as he plays the ukulele, which nearly disappears in his huge hands.

Yes, I do believe each of us has a special gift to share with the world.

tio stib

You might also enjoy: My Dementia Diary 25 – Life in Reverse, My Dementia Diary

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

You might also enjoy: Almost Heaven, My Dementia Diary

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

You might also enjoy: Life is Like a Broken Egg, My Dementia Diary

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

You might also enjoy: This child Who Once Was Woman, My Dementia Diary

 

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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