Layers

Breathing

scents
of fallen
rose petal
secrets

Unwrapping

tied up
boxes
of lost
surprises

Waiting

while tear drops
melt
false maskes
from me

Staring

into mirrors
of screaming faces
behind
shadow smiles

Knowing

layers
illusions
are dissolving

my truth
is being
revealed

tio stib, 1995, 2018

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My Dementia Diary 9 – Adventure Buddies

She never says, “No.”

My wife has been the perfect adventure buddy. No matter what I suggest, no matter where we go, she never says, “No.” Instead, she embraces the moment, delights in new experiences, finds joy in whatever we’re doing.

Let’s go camp on top of Mt. diablo and watch the sunset.

Let’s go.

How about we take the train to Klamath falls and go fly fishing/

Let’s go.

I need a break, do you feel like a sandwich at the deli?

Let’s go.

Cars, planes, trains, new people, new places, new adventures.

Let’s go!

I often smile as those memories drift thru my mind. Blindness and dementia now limit our travel radius, but she still never says, “no.”

She always answers, “let’s go!”

tio stib

You might also enjoy My Dementia Diary 8 – Sometimes She Knows, The Joy of Adventure Buddies

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

You might also enjoy: My Dementia Diary 5-“Groundhog Day”

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

 

Control Freaking

I live a funny fantasy
that I control how life will be
if only I pay constant mind
to details of my daily grind

I keep a list
of things to do
and push myself
to follow through
for if one thing
does not get done
I can’t pretend
I’m having fun

I do all this
to sideline stress
it seldom works
I must confess
and people?
they’re such a mess

for often, every day it seems
I find others don’t support my dreams
they ask that I give up my list
I fume
I pout,
I’m really pissed

so I sit and ponder here
do I give up this list so dear
what is it I really fear

if I stop controlling life
will this result in constant strife
if I slow to let love in
will pain clutch my heart again

the truth, of course
is sadly clear
this game that I hold so dear
simply masks
what I most fear
that love will hurt
if it gets near

tio stib, 2015, 2017

You might also enjoy? Intimacy; Winning the Love Game, For Guys Only

Control Freaking

I live a funny fantasy
that I control how life will be
if only I pay constant mind
to details of my daily grind

I keep a list
of things to do
and push myself
to follow through
for if one thing
does not get done
I can’t pretend
I’m having fun

I do all this
to sideline stress
it seldom works
I must confess
and people?
they’re such a mess

for often, every day it seems
I find others don’t support my dreams
they ask that I give up my list
I fume
I pout,
I’m really pissed

so I sit and ponder here
do I give up this list so dear
what is it I really fear

if I stop controlling life
will this result in constant strife
if I slow to let love in
will pain clutch my heart again

the truth, of course
is sadly clear
this game that I hold so dear
simply masks
what I most fear
that love will hurt
if it gets near

tio stib, 2015

You might also enjoy? Intimacy; Winning the Love Game, For Guys Only

Why We Need to Listen

Here’s a link to a YouTube post from Lorelai La, a woman whose wisdom and insight continually inspires me. This video, “Why We Need to Listen,” feels particularly timely today.

https://www.youtube.com/watch?v=tHqfwHbyL7o&feature=em-subs_digest

“The first rule of love is to listen” -Paul Tillich

Tio Stib Signature

Footprints

standing silent on the sand
as time drains from my mind
I see a lone heart on the beach
a love that once was mine

you asked for love
you let me in
to see
your wounded soul
you shared your shame
but did I hear
sadly, I said “no”

your heart screamed
did I feel your pain
no,
I hid behind my walls
afraid to love again

I violated sacred trust
your tears a silent shout
and now lost in loneliness
mere words will never count

I know now a larger love
That cries we’re not apart
too late though in my emptiness
I see footprints on your heart

tio stib, 1995, 2015

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