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.

 

My dementia diary – Beginnings

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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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

Categories: life journey

Tags: love, marriage, relationships, Alzheimers, dementia, blind poet, blind writer, happiness, joy, fulfillment, blind blogger, aging, partners, life journey

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

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Back to Love Basics 7, The Plus Side of Solitude Sucks

It’s easy to get so wrapped up in trying to find our soulmate that we forget about the pleasures of being alone. In case your suffering from the solitude sucks syndrome, may I suggest the benefits of not having someone else around to share life with.

Consider these advantages of being one and only one-

1. Living alone means making the bed is optional rather than submit to the control freak compulsions of a significant other.
2. Being alone means that making pancakes for breakfast on Friday at 9 p.m. requires no excuses.
3. Lonely people don’t have to share the last cookie not to mention feel the least bit guilty eating it.
4. Being alone means you can squeeze the toothpaste tube any darn way you want.
5. Alone means you can watch any television channel you want or those dvd’s you’ve been too embarrassed to share, and drink all the beer or eat all the ice cream you feel like in the comfort of your underwear, without any snarky feedback except perhaps from the pleading eyes of your dog. Okay, if you’ve got a dog you can’t possibly be lonely and don’t need to read the rest of this list.
6. Being alone means you need not explain to anyone just why you feel like blowing up balloons and then stoping on them after a trying day at work.
7. Alone means you can change the color of lipstick you wear every day without your room mate asking “Is something the matter?”
8. Single means that when you order a medium pizza you suddenly have enough “food” to last two entire days.
9. Being alone makes grocery shopping so much easier. “Did she say Toastie Crunchies” or was it “Chocolate Crispies?”
10. There is a singular bliss in solitude knowing that you can fart however and whenever you want.
11. Sleeping alone means you don’t have to pretend you are sleeping when he/she comes home late wanting to talk. Another plus on the subject of sleep is that alone means you don’t have to worry about snoring, unless, like me, you snore so loud you wake yourself up.
12. Being alone means you already have the one audience who will always listen to you. Yourself.
13. Perhaps the greatest gift of being alone is that now you are absolutely, totally available to whatever opportunity comes along. This means that when that elder gentleman in the tuxedo and top hat walks up to lonely you sitting by yourself in the coffee shop and says, “Excuse me, I can see that you are lonely and my anonymous employer has authorized me to hand you this round the world travel ticket including a check for $500,000 to cover expenses. The only stipulation is you must leave this week and you must travel alone.”

Of course, you can have only one answer…

“Me?”

And lastly, being “alone” makes you part of one of the world’s biggest ironies.

Consider this, you are sitting in solitude, feeling down, hoping that your life will change. At this very moment, all around the planet, there are millions of fellow loners just like you, with similar thoughts. Conclusion: you are actually surrounded by a sea of fellow solos. None of you are even close to alone.

I’m waiting for someone to stand up in Starbucks and shout, “Hey! Is anybody else lonely here?”

I’m listening…

Tio Stib Signature

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The Love Game, For Guys Only

For ages, men have been trying to figure out how women’s minds work, with little success. Although I’ve had my share of failures dealing with the enigma of women, I’ve discovered an approach to intimate relationships that offers some hope. I’ve concluded that if we men simply look at female relationships as a game, there’s a way we can occasionally win.

It’s called “The Love Game,” and here’s how it works-

As soon as you get involved with a woman, she starts keeping score. She puts your name on an imaginary scoreboard in her head and puts 1000 bonus points beside your name. Why? I don’t know, perhaps she wants to give you a chance at winning a game you’ll most likely lose.

Now, the fun begins, as she starts scoring everything you do against those 1000 points. She keeps a running tally, adding points when you do something she likes, taking points away when you don’t.

Yes, it’s a game for her, “The Love Game,” and it’s high time you know what this game is about, because most of you guys are losing it.

First, what are the rules of the Love Game and who makes them up?

Rule Number One: women make the rules. Unfair you say? Absolutely, but don’t think you’re going to change that before the proverbial freeze in hell happens.

Rule Number Two: The rules have never been written down. At least, never have all the rules been written down. Some have, but these have often been replaced by rules that have not. Confusing? That’s the way women want it. Unfair? See Rule Number One.

Is it possible to win a game with no definite rules? Yes, certainly, sort of. Remember that women are keeping score and basically you just have to keep doing more things they like than things they dislike. Of course, you can do something she really, really dislikes which could put you in a negative points situation, but no need to dwell on that.

How do you know if she likes or dislikes what you’re doing? Admittedly, this can be a challenge. It can depend on whether or not you smile at the right time, or the wrong time, what you said to your mother-in-law when she showed up unexpectedly at your door, and more likely, the position of the moon relative to a remote Mayan pyramid. Difficult you may think, no, impossible, but, again, let’s not get hung up on imponderables, rather let’s consider relationship realities.

Let’s talk curves.

I’m heartened to know that my male readers immediately jumped into a fantasy world of female delights, but those are not the curves I want to explore, at least not now

I’m talking about the shape of the infamous “Bell Curve.”

For those of you who think “statistics” is simply using numbers to figure out who’s going to win Saturday’s football game. let me raise your I.Q. a fraction.

A “Bell Curve” is the statistical shape created when plotting the typical distribution of activity performance over time. Consider New Year’s resolutions. We start out with little interest in such things, then we get nagged by conscious or partners to change things, we put a sudden burst of energy into the weekly conditioning program, we start feeling better, we start to slide and miss gym time, until eventually in a few weeks, maybe even months, we’re back on the couch doing our sloth imitation.

If you plotted out time in the gym versus time from the beginning urge to the final sloth recline, you’d create a “Bell Curve,” with the top of the bell reached when we maxed out our regular exercise and the bottom of the bell when we stopped.

Okay, so much for the statistics side trip, what do “Bell Curves” have to do with “The Love Game?” Surprisingly, such curves paint an accurate Picture of most males loving actions over time in loving relationships.

Consider energy and money spent against time. Once the guy thinks he’s got a shot at getting what he wants, he jumps in hot and heavy, putting lots of energy and money into making sure things work out. This is called the courtship period, where guys do whatever it takes to get whatever they want. What could guys want so much to command such extreme behavior? You can answer that, or if you’re stumped, ask your six year old niece. She already knows that much about men. Needless to say, this urge has plagued men for eons, and women know it. Perhaps that’s why they give us those first 1000 points.

Suddenly,something amazing happens.. When, by some fluke of chance, women decide to give guys what they are lusting for, male behavior radically shifts. There is a leveling off of energy and money men spend on relationships. men discover that they can still get what they want even when they stop paying for it. They start watching football games on Saturday instead of washing the little lady’s car, and she doesn’t seem to care. Now, the last side of the bell curve falls into place as basic male laziness sets in and the attention men give to their love relationship rapidly falls. guys begin to slouch on the couch

The delusion begins. Men now assume they’ve got it made. They start thinking a few nice words on occasion and “She” will just keep pumping out the love. “Great meatloaf, Honey,” and she’ll keep making those fantastic chocolate chip cookies.

No, Vacuum Brain, this fairy tale will soon explode like a well shaken beer..

But wait,there’s hope, even for those whose diminutive brains have sunk below their belly buttons.

Strangely, women have come to expect this behavior. In fact, they’ve even learned to accept that men’s minds are obviously limited,. For unknown reasons, women have chosen to give the lesser gender latitude for their foolishness as long as male homo sapiens will at least do a few minimal things.

Men, please pay attention here! This is how you win “The Love Game.”

If you simply remember to do nice things on four special days, most women, not all, not always, will forgive minor transgressions and keep your “love Game” score positive.

What are these “Special Days?”

Birthdays. Anniversaries, especially weddings. Mom’s Day. And, of course, Valentine’s Day. Christmas is a given. Only a real loser forgets Christmas. If you’re one of those, I can’t help you. I suggest you consider getting a dog instead of a lover. Your odds for affection are much better with man’s best friend.

Really, it’s that simple guys. You jusµµt remember to do nice things on those four special days and you can usually win “The Love Game.” Now that’s a absurdly small investment of your time to produce a return that would have Wall Street bankers drooling. A mere matter of hours, on four days over an entire year, to get a loving woman who puts up with your laziness every other day and still does your laundry.

Yes, you can still screw things up. You can still do something so stupid that she furiously wipes your name off her “Love Game: mental scoreboard and you’re out on the couch, or worse. Such things as giving her a lawn mower for her birthday, going to the hockey playoff game with your buddy Hank on your wedding anniversary, or getting drunk and calling her boss a bigoted slob at the company Christmas party, etc..

Sadly, male stupidity has no limits. But, I’m hoping this lesson on how to win “The Love Game” will awaken some long dormant brain cells and spark loving actions to minimize the inevitable damage that will be done by your basic instincts.

If you fall short and your “Love Game” score drops through the floor, check out my next blog post, “The Ultimate Romantic Gift, or how to recover from your inevitable love disasters. “

Now, get out there and win one for all Menkind, my dog and I are rooting for you!

Tio Stib Signature

Note to the woman who might read this: Yes, I admit it’s arrogant and foolish to pretend I know anything about how women’s minds work, but perhaps this post will inspire some man to at least try playing “The Love Game” himself. Okay, I also admit it’s foolish to expect men to read more than three paragraphs on improving loving relationships. I’m working on a comic strip that sends the same message.