My Dementia Diary 27 – What’s Your Name?

Some mornings I wake up and wonder if it’s just a bad dream, everything’s fine, My wife’s mind is not slipping away. Then, something happens that reminds me that the bad dream is true.

“What’s your name?” I heard her asking.

I looked around and found her standing in front of a mirror mounted on the bathroom door.

“What’s your name” she asked the image in the mirror.

Then, she looked behind the door, wondering where the image was.

No, it’s happening. My wife has dementia and her mind is slowly deteriorating. She puts the electric toothbrush in her mouth but doesn’t remember to turn it on, trying to brush her teeth manually. She sprays herself with air freshener rather than perfume. She puts clothes on and takes them off and puts them on again, and again, until I help her sort out what to wear. She is more and more needy, immediately fearful if she cannot find me.

But, in the midst of this downward spiral, she keeps smiling, keeps loving, keeps reminding me of why she is so precious to me.

As I write this, I find myself on the verge of tears. I want to cry, but I know I can’t. she is watching me and any sign that I’m upset, sad, disturbed, sets off a flurry of questions,

“What’s the matter?? Why are you sad? Do you love me?”

I smile and assure her, “yes, I love you dearly.”

And I wonder if the woman who used to be here is hiding behind the mirror.

tio stib

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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

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My Dementia Diary 25 – Life in Reverse

Noting my wife’s continuing mental deterioration from rational adult to simple minded child, I was reminded of a piece I saw George Carlin do some years ago. Bless his brilliant and irreverent mind, George has moved on to the great comedy stage in the sky, but he leaves many laughs behind him. I think his piece on “Life in Reverse” is all-time hilarious. Wouldn’t it be great if life actually worked this way-

tio stib

Life in Reverse By George Carlin

In my next life I want to live my life backwards.
You start out dead and get that out of the way.
Then you wake up in an old people’s home
feeling better every day.
You get kicked out for being too healthy,
go collect your pension,
and then when you start work,
you get a gold watch and a party on your first day.
You work 40 years
until you’re young enough to enjoy your retirement.
You party, drink alcohol, and are generally promiscuous,
then you are ready for high school.
You then go to primary school,
you become a kid,
you play.
You have no responsibilities,
you become a baby until you are born.
And then you spend your last 9 months
floating in luxurious spa-like conditions
with central heating and room service on tap,
larger quarters every day and then Voila!
You finish off as an orgasm.

I rest my case.

by George Carlin, 1937-2008

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My Dementia Diary 24 – A Season of Endings

“Too warm!” she told me, standing in the shower.

I realized she was no longer able to adjust the water temperature on her own, the control knob confused her. I turned the knob.

“Better,” she said.

It was another sign, another slip, another reminder of our downward journey together in a season of endings.

We’ve reached a point where what used to be easy, things that were once simple to do, are no longer so. Such changes are not obvious to her, but are painfully so for me. We are slowly sliding down to a place from which there is no return. Knowing this, I’m making every effort to enjoy the precious things we can still do together.

Recently, we took a train trip north to a small town in Oregon for a family reunion. We’ve done this before, and, as train travel is more flexible than buses and planes, it had been enjoyable. However, this time, she was more fearful, uneasy, not able to relax in a setting so different than our home world. This unease continued when we met up with family at a beautiful lakeside lodge. Ultimately, we had a good time, but I was aware of how much my wife’s ability to adapt to different environments had diminished in the past year. I was also aware of how difficult it seemed to be for other family members to interact with us. It occurred to me that it was quite likely the last family reunion we’d attend.

Philosophically, lives end, we all will pass on. Emotionally, this fact is difficult to accept. I suspect that most of the family awkwardness with interacting with us was their own fears about mortality. I wish there could have been more open conversation about this subject, but it didn’t happen. 

Youth does not want to think about the season of endings, but this is a luxury I cannot afford, so I focus on gratitude for the wonderful life we’ve been blessed with, taking each ending in its turn as an opportunity to be thankful for what we’ve had and what we still have.

“I’m taking a shower with shampoo!” she tells me with delight.

Yes, we are blessed.

tio stib

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My Dementia Diary 23 – Thank You! Very Good Day!

I am not, by any measure, a so called “morning person.” rather, as insomnia keeps me up until the wee hours and deep sleep is hard earned, I am defiantly resistant to being awakened before my anointed hour, which is never earlier than eight a.m.. Fishing trips are an exception, but that’s another story.

My wife’s waking behavior is completely in contrast to my own. Most often, she is up and buzzing around long before I’m even close to consciousness. Being hesitant to open my eyes, her active presence is usually announced by the sound of her voice.

“Thank you! Very good day!”

These words have become her mantra, used anywhere and anytime for anything that strikes her fancy.

A drawing she has just completed coloring, “Thank you! Very good day!”

Cutting rose buds for the dining table, “Thank you! Very good day!”

Hummingbirds gathering at the feeder, “Thank you! Very good day!”

Her morning cup of coffee, “Thank you! Very good day!”

Meeting people on our daily walk, “Thank you! Very good day!”

There is no end to how and where these words are used, which leads me to consider  that if our vocabulary was limited, if we only had a language of five words, my wife’s choices would do quite well.

“Thank you! Very good day!”

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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