My Dementia Diary 30 – Fragility

We are both fragile. My wife’s dementia makes her insecure and needy, easily upset by an angry word or errant action. My blindness has left me unable to do much of what I used to do, often leaving me frustrated with my limitations.

Our fragilities don’t mix well.

As my wife is no longer able to adapt rationally to most of what happens around her, including my behavior, it’s up to me to be the adult in the room, to control my responses, to avoid hitting her hot buttons. 

Painful experience has taught me what those buttons are. I’ve learned to respond immediately to her requests for attention, no matter how engrossed I might be in some project. It takes very little to cause a mental and emotional meltdown which results in a lengthy period  of comforting to restore harmony.

I still screw up, but I’ve learned how to avoid this anguish.

I’ve learned to be cheerful even when I’m not feeling it. I’ve learned to stuff anger and negative feelings that would set her off. And, I’ve learned such discipline is a good thing.

Stopping to make lunch instead of vanishing into an hours long obsessive compulsive writing frenzy is a good thing. Taking a break in the middle of the afternoon to walk with her and get an ice cream cone is a good thing. Pausing to enjoy my wife’s excited descriptions of hummingbirds flitting by the feeder is a good thing.

Being mindful of our fragility and letting my wife teach me how to live fully is a good thing.

tio stib

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My Dementia Diary 29 – My Kato

In the hilarious “Pink Panther” film series, the bumbling Inspector Clouseau has a valet named Kato. Beyond his man servant duties, Kato is tasked with keeping Clouseau on his toes, making sure the policeman’s mind is always keen, ready for anything.

Kato does this by surprising Clouseau at unforeseen moments. He jumps out from behind a curtain, drops from a chandelier, or appears inside a closet door. A fight ensues, and the two combatants proceed to destroy everything in sight as they battle each other.

I have my own Kato. Her name is Maria.

Fortunately, she is far less destructive than her movie namesake. However, She is equally silent, ever present, and constantly surprising me. Although my hearing is quite good, she has the uncanny knack of sneaking up unheard.

Bending down to tie my shoes, I’ll suddenly hear a voice in front of me, “do you need help?”

I’ll be immersed in a stream of warm water and the shower door will open, “are you okay?”

Then, there’s my breakfast routine. Being blind and needing to be organized, I’ll first set everything  I’ll need on the counter, bowls, spoons, measuring cup, fruit, hot cereal. Then, I’ll put a pot of water on the stove to boil. When it starts steaming, I’ll turn around for the hot cereal and…

The counter has been cleaned. Everything has been put away, often in unexpected places. My Kato has been busy.

“Do you love me?”

“Always.”

tio stib

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My Dementia Diary 28 – Resets

We have a routine. Except for the rare appointment or when things go sideways, we do the same things everyday. This stability of sameness comforts my wife. It is easy to fulfill her simple expectations. We get up, we walk, we visit the grocery store, perhaps the library.  Then, return home and eat breakfast. In the afternoon, she colors and I write. Often, our kids will call via video conferencing from one of the three different continents they live on. Then, time for late lunch, which serves as our dinner. Another walk, maybe an ice cream cone stop. By then, the sun is dropping and we head for bed.

However, with increasing frequency, our days don’t go that way. Something happens which sets off my wife’s fragile mind and she has a meltdown. She’ll get anxious, thinking something is wrong with someone in the family. We need to call, but no one answers. Or, I’ll get upset with something I can’t do and mutter some angry words. Her response will be, “why are you angry with me?” I’m not, but that’s whaat her mind grabs onto. The past week, she’s been arguing with the images in the mirror, no longer able to realize they are reflections.

There’s a long list of little things that can upset our daily pattern. When this happens, I’ve learned to drop whatever I’m doing and make a radical change.

It’s time to reset, do something different that takes her mind in a different direction.

Go for another walk, visit the taco truck for a burrito or the coffee shop for hot chocolate, anything that provides a radical change in environment which gives her mind something else to focus on.

Fortunately, she never resists. As long as we’re doing something together, she’s happy. Moments after we’ve left home for a new experience, she’s a different person, whatever was bothering her has been forgotten.

Lying in bed at night, I play back the day’s memories. If I recall smiles and happiness, we’ve done well. 

And I go to sleep knowing tomorrow will be a new adventure.

tio stib

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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 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 16 – Good News, Bad News, Where is My Solitude

For years, I dreamed of a partner with whom I could share all of life, the joys and the hardships, someone who would be willing and able to take off on a moment’s notice to places unknown simply because it seemed to be a great idea at the time.

Finally, I was blessed with just this partner, and, for one year, we had the magic life together that I’d always dreamed of.

That was a year of unsurpassed bliss and those memories still bring me smiles. However, as so often happens, our road together took an unexpected turn. I lost my sight and she began losing her mind.

And, so, we’ve adapted.

We no longer drive miles from home, but limit our roaming to walking local walking wanderings. It has gotten to the point that I no longer feel comfortable leaving her alone, and, as I’m her only caregiver, this means we’re together all the time, always. Fortunately, my wife has a naturally cheerful disposition and she’s easily guided into whatever activity we need to be doing, from daily walks to grocery shopping. The biggest challenge is my personality, the fact that, for most of my life, I’ve enjoyed times of solitude.

While I’ve treasured sharing adventures with friends, from sailing trips to hikes to new restaurants, when no one was available, I went off on my own. And I loved it!! As has been often shared by others, solitude is not loneliness, it is the beauty and peace of being alone. I have fond recollections of such solitude times, from solo hikes and sailing trips to simply sitting on a beach at sunset. Quiet moments when I could hear stars talking to each other.

Given my wife’s new need for constant companionship, I am finding new ways to give myself the gift of solitude. As she has the envious ability to fall asleep in seconds, I often listen to those imagined stars deep into the night waiting for drowsiness to creep over my mind. Or, I’ll sit outside in the morning sunshine, letting the sweet scent of nearby Jasmine float through me, recalling other dreams of times gone by.

Solitude is soul food, and, as always, it’s up to me to feed myself.

tio stib

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The Memory of a Single Rose

has love been worth
the silly fears of youthful years
the agony and sobbing tears
rejections, dejections, emotions tossed
plans and hopes and dreams now lost

has love been worth the unmet wants
the emptiness of sensual haunts
the births, the deaths
the final breaths
the agony of cried regrets

all this for a glimpse of bliss
the rapture of a secret kiss
a sudden smile
a soft caress
the eternity of souls confessed

and so I ask a broken heart
as time tugs our love apart
was it worth the cost
the moment’s flame?

ah, yes
sighs the sent
the sight
the memory 
of a single rose

again

20100531 Roses from Laura 002

tio stib

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