Tag Archives: blind blogger

Unknown's avatar

My Dementia Diary 30 – Fragility

by

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

You might also enjoy: My Dementia Diary 29 – My Kato, My Dementia Diary

Unknown's avatar

My Dementia Diary 29 – My Kato

by

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

You might also enjoy: My Dementia Diary 28 – Resets, My Dementia Diary

Unknown's avatar

My Dementia Diary 28 – Resets

by

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

You might also enjoy: My Dementia Diary 27 – What’s Your Name, My Dementia Diary

Unknown's avatar

My Dementia Diary 27 – What’s Your Name?

by

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

You might also enjoy: My Dementia Diary 26 – Over the Rainbow, My Dementia Diary

Unknown's avatar

My Dementia Diary 18 – The last Posole’ Party

by

this past weekend, my wife and I had a posole’ party for friends and neighbors. Posole’ is a traditional Mexican soup served for special occasions and we’ve hosted such gatherings many times. When we first started doing this, my wife would prepare the posole’ from a recipe she’d learned from her mom. As her mind has deteriorated, I’ve picked up more and more of the process until, now, I’m the cook, and my wife the assistant.

Part of the challenge is procuring groceries, a process requiring us to walk downhill to the store and lug the needed items back up the hill. There is always a second trip because I always forget something. I put these efforts down to healthy exercise. The larger difficulty is emotional and mental, staying patient and caring as my wife becomes more and more anxious about the coming event, asking the same questions again and again. Who’s coming? When are they coming? Why are they coming? Who’s coming?…

As much as she enjoys the thought of company, she is also fearful that someone is going to take her things, so she begins to hide and cover them up. Still, we got through this and by mid afternoon the posole’ is simmering on the stove, our home filled with the sumptuous aroma of good things cooking. My wife is excited but needs hugs and assurance that all is well. 

Guests eventually arrive amidst smiles and laughter and all gather around to share a delicious meal and the opportunity to connect with each other again. My wife is happy, basking in all the love of the moment. Yet, I notice that she is not able to enter into conversation, most topics are too confusing for her. She retreats to the kitchen to do dishes, babbling joyfully to herself.

The evening winds down, friends depart, my wife and I hug, feeling good for the party’s success, but too tired to clean up after it. 

As I sat sipping tea the following morning while my wife engaged in her favorite pastime, adult coloring books, I reflected. yes, the previous night’s event had gone wonderfully well and it had been a great gathering. My wife had enjoyed it. Yet, I was beat. Certainly, the effort had been worth it, but would I ever want to do it again? perhaps it’s time to quit on a high note.

Time will tell.

tio stib

You might also enjoy: My Dementia Diary 17 – Hiding the Cookies, My Dementia Diary

 

Unknown's avatar

Floating

by

floating in a tranquil sea
my thoughts drift to what might be
concerns and chaos slip away
as I inhale a perfect day

clouds above sail slowly by
white against an azure sky
I close my eyes and feel the grace
the sun’s caress warm on my face

years of pain
the tides of time
have scoured the beaches
of my mind
at last, surrendered
to my fate
I no more struggle
with death’s date

floating in a tranquil sea
I smile and simply
let it be

tio stib
2015, 2018

You might also enjoy: Control Freaking, A Mirrored Smile

Unknown's avatar

Selling Out to Google Maps

by

I may be blind but I can still feel the sun’s warmth on my face and if it’s noon, I know I’m pointed south. On a recent family trip, I felt the sun’s noon warmth and knew we were driving south. but, Napa was north. We were headed in the wrong direction. What had happened?

The driver had entered the desired destination into Google Maps on his smart phone. However, deep into conversation with his front seat companion, he’d missed a turn. We were now not only headed in the wrong direction, we were about to cross a toll bridge.

Yes, the female Google Maps voice did eventually sort things out. We turned around, paid the toll to recross the bridge, and got headed north. but how had the driver made such an obvious mistake in direction? I pondered this question as we drove on in search of amiable wineries and fine wines. I noted several other google Map miscues, the computer guide was far from perfect. We were doing our third circle of the same block before the driver realized he’d missed another turn.

What happens when we sell our souls to Google Maps?

In this case, the driver had surrendered all connection with the reality outside his vehicle. He had no idea which way was south and that south was the wrong direction. He had no vision of the larger world he was operating in, trusting that a voice from a computer would take care of his directional needs.

True, google Maps did eventually get him to the wineries he was seeking. but at what cost? What did he miss along the way? what sights, what experiences, what happenings were left unnoticed because he was content to live within the isolated bubble of his automobile reality?

I wonder what kind of world it will be when the majority of people around me are content to live in such bubbles. It seems obvious that such lives would be self-centered, caring little for most of what lies outside their isolated existence, things like, weather, sunsets, Nature in all its wonders.

Ouch! Not my kind of world. Not my kind of life. I’ve been blessed with a lifetime of adventures with road maps, topographical maps, nautical charts, maps on napkins, all kinds of real, touchable maps. How boring life would have been without all those maps guiding me to lost places, crazy characters, and unexplored  frontiers.

“No, sonny, Denio Hot Springs ain’t on the map. Buy me a beer and I’ll show you where it is.”

“Damn, I’m thirsty! Do you think the name ‘Sometimes Creek’ means it’s not here in the summertime?”

“I think that vacant gas station we just passed was the town of Desolation. So much for our cold beer break.”

“The vulture sitting on the sign seems to say that things are not so great in Paradise, population 2.”

“Yeah, that big X on Wally’s map meant big rapids. Next time, tell us before we get sucked into a monster like that.”

“I know we’re out of gas, but that spot you thought was a town is a piece of chocolate.”

I dare you to break your bubble, turn off your smart phone, grab a real map, and chase your own adventures.

You might even get lost.

Tio Stib

You might also enjoy: Dead Horse Point, Ridge Runner

 

Unknown's avatar

My dementia diary – Beginnings

by

Five years ago this month, two things happened which changed the course of my life. I lost my sight and my wife began to lose her mind.

I’d already lost vision in one eye when, one day, my other eye clouded over. For the second time, a rare blood clot condition had fried my remaining healthy  optic nerve. The same week, my wife had a seizure which resulted in total amnesia. Fortunately, within twenty four hours, her memory came back, but her mental ability to reason, remember, and connect with reality began to deteriorate.

Sudden blindness left me disoriented and depressed. It was months before I was able to start on the path towards re-inventing my life with the help of folks from California’s rehabilitative services program. While  riding the emotional rollercoaster of adapting to my new world, my wife was also changing.

More and more, she was showing the signs of dementia, repeating questions many times and forgetting recent events. Over time, the dementia symptoms became more obvious. Her ability to plan and organize disappeared. Her creative activities got simpler. Where she once enjoyed abstract painting, she now spends hours with coloring books, her mind unable to deal with mixing paint colors.

She has become a child who loves life, no longer distracted by adult worries or conceptions of what life should be. I deal with practicalities, grocery shopping, money matters, scheduling. We have found a new balance, becoming a unique partnership of attitudes and abilities..

Do I miss the dreams I had for our life? All the time. I miss the adventures we had and the ones I’d hoped to share. I miss saying, “let’s go!” jumping in the car and taking off to nowhere. But, as the popular saying goes, “it is what it is.” The work now is making the most of the life  we still have.

That’s a daily challenge, one I’m going to explore in writing this journal. I invite you to join us as we walk together, blind and demented, down the road of life.

 

this child who once was woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib
2017

You might also enjoy: First Snow, Forgiveness, the Greatest Gift

Unknown's avatar

hibernation

by

an eye opens
grey
no bright light
no sunshine
a dark, gray, day

deep in the cozy comfort of warm blankets
I snuggle

the mind stirs
no “to do” list
no appointments to miss

the eye closes
I choose hibernation

again

tio stib
2018

You might also enjoy: Dancing Toes, Night Walk

Unknown's avatar

waterdancing

by

drops

streams

spray

splashes

ripples

waves

smiles

giggles

water dancing

tio stib

2017

You might also enjoy: Dancing Toes, A Thousand Clowns

 

frogs waterdancing redwood park, San Francisco