Tag Archives: happiness

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My Dementia Diary 12 – My Grandfather’s Clock

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There is a clock sitting on the shelf near our bed. It belonged to my mom’s dad and was passed on to me, making it my grandfather’s clock. Over a hundred years old, this timepiece is relatively small, meant to be set on a fireplace mantle, but it has a surprisingly vibrant chime. There are no batteries within, its mechanism driven by a coiled brass spring, which I wind weekly with a dozen turns of a key. For this effort, I am rewarded with a melodious chime counting out each and every hour.

I take comfort from these chimes, from the tick-tock of the ever swinging pendulum, an aroused awareness that time is now. I wonder if my grandfather, my mother, other family members, felt a similar connection.

I’ve lived more than 600,000 hours so far, a surprising number when I attempt to remember the breadth of my life experience. what happened to all those hours? The more important question, what will I do with the hours I have left?

Each tick of that clock is a moment I will never have again.

How many more chimes are left in my life?

How blessed I am to have had so many hours of being.

As my wife sleeps peacefully beside me, I again find comfort in the tick-tock of time, past, present, and future, and I drift away in hopes of hearing the morning chimes once more.

There’s an old folk song that beautifully expresses my sentiments, perfectly named, “My Grandfather’s Clock.” Here’s a link to a Johnny cash rendition

tio stib

You might also enjoy My Dementia Diary 11 – Morning Bliss

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My Dementia Diary 11 – Morning Bliss

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After several weeks of blustery cool and wet weather, today dawned warm with azure skies. We started out on our daily walk with one less layer of clothes. I’d even gone so far as abandoning my jeans for shorts. The Spring air, the melodies of newly arrived songbirds, my wife’s constant flow of delighted descriptions of happenings around us, was blissful.

I was suddenly struck with how fortunate we are to have the life we live, a peaceful and safe town closely connected to Nature, nearby friends and convenient walking access to all our daily needs, a comfortable and affordable home.

Given the challenges dementia and blindness present us, it’s hard to imagine how we could have a better living situation.

On top of these blessings, is the gift of still being able to share the simple joys of living in such a perfect place with my wife. True, we no longer have any sort of deep intellectual conversations, yet we can enjoy the little things. Ice cream cones and hot dogs. Tea and cookies. Hummingbirds at the feeder. the honks of Canada geese flying overhead. The smell of the beach at low tide. The laughs of children at the playground. “Hllos” and “How are yous” with neighbors and passersby.

My wife has become my eyes. through her childlike curiosity and delight, I am able to enjoy the world around us.

For this, I am deeply grateful.

tio stib

You might also enjoy: My Dementia Diary 10 – Where’s the Spatula?

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My Dementia Diary 9 – Adventure Buddies

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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

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My Dementia Diary 8 – Sometimes She Knows

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She cried last night. She was afraid. Something was unsettled in her mind, but she could not explain it. I hugged her close and kept whispering that I loved her. Slowly, my wife began to relax and eventually fell asleep.

I lay awake and thought about what had just happened. My wife and I have never talked about her dementia, her failing mind. Months ago, when I realized what was happening, I’d wanted to have that conversation, but, by then, it was too late. Her brain could not grasp dementia rationally. Instead, she became angry, upset because she thought I was criticizing her. I’ve not mentioned the subject since. Yet part of her knows that something is wrong.

Sometimes, in the middle of another conversation, she will stop and ask me, “what’s happening? What’s the matter?”

And I hug her even tighter.

tio stib

You might also enjoy: My Dementia Diary 7 – The Marvelous Mind

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My Dementia Diary 7 – The Marvelous Mind

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It is estimated that the human mind processes from 50,000 to 70,000 thoughts each day, 35-50 thoughts each minute. All this happens within a mass of about 3 pounds that has over 100 billion neurons fed by 400 miles of blood vessels. No wonder the human brain demands more energy, about 20 percent, than any other body organ.

As marvelous as our brain is, we often take it for granted.

Until it stops working.

Until some neurons stop firing, and a person can’t count backwards from ten anymore.

Until something short circuits, and the brain doesn’t remember who was just on the phone.

Until someone starts stuttering, unable to find the right words they want to say.

Until reality becomes a series of fragmented stories.

Then, we stop taking the marvelous mind for granted. Then we wonder how after spending millions of dollars and countless hours researching dementia, scientists still do not have a single drug that can cure or even help with this condition.

Then we scream in frustration as we watch the person we love fall farther and farther away from us.

tio stib

You might also enjoy: My Dementia Diary 6 – A Shared Life

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My Dementia Diary 6 – A Shared Life

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“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”

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My Dementia Diary 5 – Groundhog Day

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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

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winterend

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the cave dwellers stirred

doors cracked

light and warmth crept inside

the sun, long unseen

reappeared

cautious toes inched out

pale faces squinted

fists rubbed dazzled eyes

lips curled with wonder

smiled

voices murmured

chorused

hallelujah!

a zombies’ reunion

winterend

tio stib

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My Dementia Diary 3 – Doctors and Diagnosis

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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

 

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My dementia diary – Beginnings

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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

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