My dementia Diary 14 – Pink Nails

 

Vietnamese. Spanish. english. Put a blind guy in the middle of this language chaos and what do you get?

Pink nails, or so I’m told.

I am realizing that my wife is less and less able to care for her personal hygiene, from remembering to take showers to brushing her teeth. She has been meticulous about such things in the past, so I’m  always surprised to discover such care is not happening. the remedy is usually a nudging, a gentle reminder, and she will spring into action, smiling. Yes, I am blessed most things are still easy.

But her nails are a different matter.

Up until now, she has done her own finger and toe nail care, cutting, filing, and painting them, an activity she has much enjoyed. However, she recently held out a hand to me and asked me to touch it. Doing so, I felt her nails and realized they were quite long, much longer than she usually kept them. It had probably been weeks since they’d been trimmed. Obviously, she wasn’t doing this herself anymore.

Off we went to the local nail salon. We walk by it often and greet the workers who sit outside lunching, all friendly and all Vietnamese. Upon entering, I explained that my wife needed a manicure and pedicure and pink was the preferred color for her nail polish. There was a response in strange words which I took as affirmative. then, I sat nearby as two young women babbled to my wife in Vietnamese and she babbled back in Spanish. I was quite content to keep my English out of the conversation, trusting my wife’s needs would be met as women seem to be able to understand each other no matter the language differences.

A short time later, she waved her hands gleefully in front of me and I, sensing they must now look beautiful, told her so, feeling good that, once more, we’ve successfully adapted to life’s continuing changes.

Yes, her nails are now likely pink, but I don’t really care, she’s happy. No, I was not tempted to have my own nails done. Blindness gives me a good excuse to avoid that. Besides, I don’t look good in pink, or so I’m told.

tio stib

You might also enjoy: My Dementia Diary

My Dementia Diary 13 – 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

You might also enjoy: My Dementia Diary

Taxi School-Chapter 2

Introduction

Al McGinty, “Gint” as he is known to friend and foe, does not like change. He’s driven the same cab for thirty years, eats at the same cafe every morning, can’t say a nice word about politicians or lawyers, and worships New York City. He has a unique lifestyle, one true friend, Wally, and reads the New York Times each evening with a glass of brandy and a Cuban cigar. His is the perfect world.

But that’s about to change.

Gint is the main character in my novel, “Taxi School,” and you can follow Gint’s story as his life explodes and he is forced into one of Nature’s three ultimate choices-

Adapt, migrate, or go extinct.

I’ll be publishing a new chapter each week, hope you follow along. comments, on any line, are always appreciated.

tio stib

CHAPTER 2

“Jesus, Johnny, you got nothing better to do but read “Playboy,” blurted Gint as he burst into the office of Carlutti’s Car repair, “I can see you have a demanding schedule, but I need my cab, preferably today.”

ir.

Johnny, a good looking guy with a tanned face and a full head of slightly grayed black hair, was not the least bit moved by his surprise visitor. He remained seated in his swivel chair, boots up on the desk. and raised his magazine for Gint to view.

the title read, “World Traveler.”

“Lulu wants to get out of town,” said Johnny, “and what Lulu wants, Lulu gets.”

“As well she should,” replied Gint, remembering that  Lulu had been the hottest chick in the old neighborhood. She still turned heads. Lulu and Johnny had been lifelong sweethearts.

“As for my demanding schedule, hell, Gint, your Checker cab is about the only automobile I can work on anymore. These days, car repair is all about computers, and I’m not going there. J3 loves that crap and he can have it.”

J3  was John Carlutti  the third, the youngest of the male Carlutti line to work at the repair shop, and the kid Johnny yelled at as he opened the door to the shop, over the noise of air wrenches and occasional curses, “J3, move your sorry ass and pull Mr. McGinty’s cab out front!”

Gint saw a kid with a mop of black hair and grease on his face look up from under a car hood, smile, then dash outside. then Gint saw something familiar.

“Hey, Johnny, isn’t that Joey’s cab?”

Yep, he left it here last week. Asked me to sell it.”

“What?” Gint cried out, turning to Johnny in disbelief, “he can’t do that!”

“Well, he sure as hell did,” said Johnny, “came by, said he was hanging it up, asked me to send the sale money to an address in California.”

Stunned, Gint sat in a chair beside Johnny, speaking softly, “we’ve been in the business together for thirty years, bought our cabs together. We’re partners, a team, the last two Checker cabs in New York City.”

“Not any more, Gint, now you’re a team of one.”

The office street door opened, and J3 stuck his head in, “here you go Mr. McGinty, thanks for using Carlutti’s Car Repair.”

Gint mindlessly shook the kid’s hand and walked out.

On the sidewalk, gint whistled once and Wally came bounding down the street. Gint opened the driver’s door and the two climbed in to the last Checker cab in New York City.

-to be continued-

You might also enjoy: Taxi School – Chapter 1

My Dementia Diary 6 – A Shared Life

“for better for worse, in sickness and in health, ’til death do us part.”

These thoughts are part of many marriage ceremonies, I’ve committed to them myself. Yet, until recently, I’ve never fully grasped their significance.

In the past, the bumps on our life road were never terminal, there was always a way out, there was always tomorrow, things would get better, time was on our side.

That’s not our reality now. Alzheimer’s dementia is no game of the day, not a trivial illness that will go away, we’ve now entered a path that is one way only, and it well end only one way.

Most of us take all measures to avoid the subject of death and dying. In younger years, I was certainly that way. However, later in life, death has knocked on my door several times and I’ve learned to open my heart and appreciate the gift of being with other’s as they end their life journey. Is this tough work? Beyond words. But, so are the rewards.

Being blind has humbled me. Blindness took away many freedoms, many activities and experiences I often took for granted. Our life now, our shared life, is simple. There are no complicated agendas, no long “to do” lists. We get up and enjoy the wonders of a new day. I listen as my wife delights in describing hummingbirds hovering at the feeder, as she greets passersby and talks to children, and reminds me we have to buy more cookies.

Our shared life has become a series of special days. Our special days have become a series of precious moments.

tio stib

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My Dementia Diary 5 – Groundhog Day

In the 1993 fantasy comedy film, “Groundhog Day,”the main character, a weatherman named Phil Connors, discovers that he has become stuck in a time loop where the day he is living repeats itself over and over. No matter what he does, Connors wakes up to the same day, again and again.

Connors soon realizes that no matter what he does, no matter how insane his actions are or how much he messes up, no one will remember. He will wake up tomorrow and start all over again. However, it also becomes apparent that whenever he does something that improves the lives of others, this good carries forward and when he wakes up the next day, the world is better.

I find myself in my own “Groundhog Day” loop, but mine is no fantasy.

My wife’s deteriorating mental condition has resulted in her mind not being able to remember anything in the recent past. This means that when I screw up, as I often do, and say something that upsets her, she gets angry, but in a short time, if I’m patient and let the storm pass, she soon forgets all about what had happened.

I get to start all over again.

My daily focus is my wife’s happiness. Still, my ego, my expectations, jump up and bite me far too often. I say the wrong things. I don’t pay enough attention to her. I get angry at life. She gets upset and pulls away. Realizing my mistake, I go into sooth and patience mode, and eventually we get back to calm again. I store the experience in my mind and the next day, I do my best to avoid a recurrence.

I’m getting smarter at recognizing the triggers that have set me off previously, taking better care of balancing my own needs to minimize frustration, enjoying the purity of my wife’s simple joy of being.

Will I escape this time loop? Phil, committing to make himself and the lives of those around him better, eventually does so through the power of love.

At this point, love is the only answer that holds out hope for me.

tio stib

My Dementia Diary 3 – Doctors and Diagnosis

How is dementia diagnosed? Yes, there are brain scans and other tests that can show evidence of damage that could cause dementia. When my wife had her seizure five years ago, a brain scan was done. A a neurologist whom I trusted, observed no irregularities with her brain. The doctor’s best explanation for the seizure was emotional stress. Dementia was not mentioned. MY wife was in good health, 55 years old, and had no family history of dementia. Yet, within months, changes in her behavior became evident. For many, this is how dementia is diagnosed.

When a person’s mental ability begins to diminish, when memory begins to falter, when daily activities such as preparing a meal become difficult, dementia, although hard to accept, becomes obvious. Unfortunately, by the time such behavior becomes apparent, the disease has significantly progressed.

Further research has led me to several conclusions. Dementia is a complicated disease with multiple symptoms and multiple possible causes. Millions of people all over the world suffer from dementia and the number grows as life expectancy increases. Finally, despite years of research, countless hours and dollars, spent in search of a cure for dementia there is not a single drug available that can successfully treat this disease.

Does this mean that a diagnosis of dementia is hopeless? No, new research demonstrates that for those in the early stages of the disease, there are treatments that can arrest and possibly reverse some forms of dementia. However, when dementia has progressed beyond a certain point, there is no turning it back, at least for now.

This is where I find myself with my wife’s condition. She now exhibits all the symptoms of Stage 2 Alzheimer’s, putting her in the middle of the disease’s typical progression. After recent consultations with several doctors, I don’t think it is realistic to believe that my wife’s condition is going to improve. Instead of continuing a search for a miracle cure that does not realistically exist, I’ve chosen to focus on doing things that maximize our daily happiness. Briefly, this means keeping our life as simple as possible, prioritizing activities that bring us health and joy, and being grateful for our many blessings. No, I’m not giving up on some future development that might successfully treat her dementia, rather I’m choosing to make the most of what we have now.

A walk in the sunshine along the beach, listening to birdsongs, stopping to smile at children playing, smelling the first fragrant flowers of Spring feels like a much better way to live our life together than wasting time hoping another brain scan will somehow change the course of our life.

The internet is full of information about dementia, it’s causes and treatments. My taste for rational scientific thinking led me to Dr. Dale Bredesen’s book, “The End of Alzheimer’s.” Bredsen observes that dementia, in particular Alzheimer’s, is a complex disease. He  offers a protocol that evaluates  a number of proven factors that might be contributing to a person’s dementia. Scientific tests have demonstrated that for some people, treatment of these factors can improve the dementia condition. There is no miracle cure here, rather a thorough and practical approach to understanding and possibly treating Alzheimer’s.

Here’s the link to “The end of alzheimer’s, the First Program to Prevent and Reverse Cognitive Decline.

Wishing you a road to happiness.

Tio Stib

 

My Dementia Diary 2 – Signs

“When is he coming?” she asked.

“At noon,” I replied.

Several minutes later, “when is he coming?”

Again, I replied, “at noon.”

Then, five minutes later, “when is he coming?”

This time, irritated, I respond loudly, “he will be here at noon.”

When my wife first started doing this, I assumed she simply was not paying attention and I became frustrated having to answer the same question over and over. I soon realized there was something else going on. Her mind was not remembering my answers.

There were other signs. Her ability to process numbers faded. Simple addition and subtraction was not happening. It also became apparent that she could not plan and organize thoughts anymore.

Still, to most people around her, my wife seemed fine. She was happy, always glad to meet people, singing and whistling as she went about her daily activities. I watched as her family struggled to accept her new mental reality. Like me, at first they were frustrated with her inability to remember things, her confusion over simple tasks. Then, they too began to adapt.

We continue to adapt as her mind continues to deteriorate. We adapt to the sadness, the grief, the difficulty of dealing with the reality that someone we love is less and less able to connect with us each day.

the signs keep coming, like road signs proclaiming the destination is getting closer and closer. But no one wants to get there.

Yesterday, after returning from our daily walk, I watched my wife trying to unzip her jacket. Her hand kept raising the zipper up instead of lowering it. I could tell her mind was confused. Something was not happening the way she expected it to. I gently helped her unzip the jacket.

Her mind gets more confused now. She has trouble recalling names and finding the words she wants to say at times. Yet, there are spells when everything seems fine and part of me hopes this is so.

Then, another sign appears.