for the first time
in seeming months
we sat at water’s edge
mesmerized by stillness
listening
to the gentle lap of waves
feeling the warmth
of afternoon sun
slowly melt our frozen souls
shadows passed
as geese honked overhead
laughing children scurried by
Ah…
I heard a voice within
at last,
there is hope again
tio stib
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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
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I wonder if I’ll ever be
happy with just plain old me
accepting what the mirror can see
surrender to reality
stop playing the re-invention game
lusting after love and fame
stop playing other people’s games
hope the world will speak my name
I wonder who I will be
when I give up on changing me
exhaust all possibilities
get up one day and let it be
tio stib
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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
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 wife and I have a common need.
Simplicity.
Her dementia makes chaos confusing. My blindness makes disarray frustrating. Fortunately, our small apartment limits the possibilities for disorder.
However, Order for my wife’s mind is putting all the silverware in one drawer. For me, order is putting the forks with the forks, spoons with spoons, etc.. I’ve accepted the daily task of doing this sorting by touch, relieved that I’m not searching for cutlery in the bathroom.
We have our own desks, sitting across the room from each other. I sit and write on my computer as she sits and works on her many coloring books. I make no attempt to organize any of her materials, although I sometimes try to help find her reading glasses. It amazes me how one moment five pairs of reading glasses have vanished and an hour later all are strewn across her desk. The saving grace in such situations is the knowledge that nothing can get too lost in our small home space. I say that knowing how distraught I’ve been frantically searching for a spatula only to finally find it in the refrigerator.
Simplicity also governs our activity schedule. We typically get up and go walking around town, varying our route depending on weather and mood. We return to eat breakfast and then head to our work zones. At some point, we’ll stop and exercise, break for lunch, and often take another walk before sunset. Interspersed between these daily events are a occasional visits by friends, trips to the library, shopping, or eating out.
compared to life before blindness, when a sudden impulse would propel us into a car and off to the mountains or ocean or some other getaway destination, life now is quite uneventful. Does this bother me?
Yes. One of my most difficult challenges is not being able to just take off when the mood strikes me. I’ve found no consoling rationale that comforts me here but eating my heart out for what can no longer be won’t do us any good. It is what it is.
I’ve always liked order and simplicity, but I’ve also enjoyed chaos and complexity. In the past, I loved the process of working through chaos to restore order, through creative effort and physical work. Sure, I can still do some of that with my writing projects but I’ve yet to find this as rewarding, as satisfying, as taking a plot of empty land and turning it into a vibrant garden.
In truth, as much as my wife and I need simplicity in order to have a functional life that minimizes frustration, there is one nagging trade off. Simplicity, however helpful it may be, can also be extremely boring.
Perhaps this is why the sudden desire to walk downtown for an ice cream cone has become a life changing event.
tio stib
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
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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
“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.
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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