My Dementia Diary 46 – Caring for the Caregiver

I used to pride myself on my independence, my self-reliance. I’d been brought up believing that real men dealt with their own problems, asking for help was a sign of weakness. Yes, I’ve learned that such prideful small mindedness is foolish. Blindness humbled me.

Still, it’s hard to let go of old habits, such as the notion that I can be the sole caregiver for a wife whose dementia continues to deteriorate. Being blind has certainly lowered my resistance to ask for assistance. I have no qualms about asking a passerby in the grocery store if we’ve grabbed the right kind of cheese or tea. But, when we’re home alone and help is not readily available, I push myself to either find a solution to the problem at hand or just let it pass by as something that doesn’t really matter anymore. Who cares if my wife has matching socks as long as she has one on each foot?

But the daily challenges are increasing. A few weeks ago, I could count on my wife sitting at her desk and coloring happily away for an hour or more. Something has changed inside her brain and now such activity might last only fifteen minutes. The hour I used to have to let my mind get lost in creative writing has disappeared. Now, just when I’m beginning to get into a clear thought, I’m interrupted by my wife hovering over me. She wants attention. She wants to hear that her drawings are beautiful.

Of course they are.

I knew this was coming. I knew when she stopped painting and doing her own abstract designs and moved on to coloring books that her mind was slipping away. I knew that, in time, even the coloring books would be too complicated.

I knew the time would come when the demands of caring for her would overwhelm me.

That time is near.

I’ve begun seeking someone who will visit us for a few hours and help care for my wife, give her the attention she needs so that I can take a break. Someone with a big heart who  connects with my wife’s inner joy and who will free me to seek the quiet peace needed to renew my own spirit. There are no adult day care programs in our town, so I’ll need to build our own.

It is time to take care of the caregiver.

tio stib

You might also enjoy: This Child Who Once Was Woman, My Dementia Diary

My Dementia Diary 44 – Yours to Count On

Over the years, I’ve made hundreds of acquaintances, but precious few friends. The difference between one group and the other is four words.

Yours to count on.

Those are the words inscribed in a book given to me by a man I’d spent an intimate and intense week with during a workshop in Alabama. He gave me the gift as a tribute to what we’d gone through together, including a fire walk.

I remember opening the book and seeing the words, saying them out loud,

“Yours to count on.”

I looked at him. He smiled, and shook my hand. 

I’ve never seen him since, haven’t communicated in any way. But, if I reached out to him today and asked for his help, I know he’d be there.

He was that kind of guy. he was a real friend.

Some time back, faced with a seemingly impossible situation where I was caring for a dying family member while needing to complete a construction project before a bank loan was due, I reached out to three guys who were friends.

They didn’t ask why, but jumped in a car and drove for hours to show up at my front door. they spent several days completing the project for me, shook my hand, and returned to their lives.

They were mine to count on.

There have been others. The kind souls who spent hours comforting my dying relative, giving me a break to renew my soul. 

Good human beings. 

As I stop and pause to consider the blessings of true friendship, I’m reminded that I, too, want to be someone who can say,

“Yours to count on.”

tio stib

You might also enjoy: Flavors of Friends, My Dementia Diary

My Dementia Diary 43 – The Last Christmas

I’ve struggled with this post, started and stopped it many times, unable to create any sort of writing momentum. I sense this is the result of a month in Mexico, spending the Christmas holidays with my wife’s family in a world that is quite foreign to me.

I took my wife to her home town because I felt it might be the last Christmas she would be able to remember who her family was. It was a trip that had to be made. It was a trip I’ve avoided since I lost my sight as the world there is a blind person’s nightmare. It is not only a never ending physical obstacle course for the disabled, but it is also noisy, dirty, and unsafe. I spend the entire time there in survival mode, just trying to stay sane.

Needless to say, any urge I might have had for creative writing quickly disappeared. 

And so it went for a very long month. yes, the family was glad to reconnect with my wife, especially our two oldest kids. It was interesting to note how different family members interacted with her. I was impressed that her mother, normally quite loud and outspoken, simply listened as her daughter babbled on and on, repeating questions, often making no sense. Mom was simply happy to have her daughter with her. Our daughter, though, kept telling her mom to speak Spanish instead of gibberish. That wasn’t going to happen. She couldn’t accept her mom’s dementia. 

After days of dragging us around doing errands and my wife getting upset with the continuing chaos, our son realized he was going to have to change his attitude and behavior with her. He’d finally grasped that his mom was no longer a rational, intelligent adult but a loving, open hearted four year old. Instead of trying to make his mom fit into his world, he would need to fit into hers.

And so, he just played with her.

That was the high point of our visit.

It has been several days since our return to the States. I didn’t realize how exhausting the journey had been until we returned home. I now have an even deeper appreciation of our simple, ordered life here.

I’m hoping the urge to write will reawaken again.

tio stib

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

Why I Like Being Blind

No, in truth, I seldom like being blind. However, there are moments when I recognize that blindness has some benefits. Here are my top ten reasons to like being blind-

  1. When I get up in the morning, I can’t see how old I’m getting in the mirror.
  2. It’s nice being personally guided through airport security and other checkpoints, avoiding long lines of annoyed travelers.
  3. I don’t have to pretend I’m ignoring people I don’t like. I really can’t see them.
  4. I don’t need to shave every morning, or for that matter, worry about wearing matching socks. Yes, I admit age has something to do with this disregard for fashion.
  5. I can now unabashedly ask for help, paying no attention to my previous suffocating shyness. I need all the help I can get.
  6. I’m no longer asked to help people move. My history of breaking other people’s valuable objects has nothing to do with this.
  7. I now have an excuse for talking to myself. I’m talking to my computer.
  8. I now have a socially acceptable excuse for eating with my fingers. It’s the most effective way to get food into my mouth.
  9. I now have a more acceptable reason than being drunk for tripping over curbs. Yes, likely I’ve been drinking, but now I’m blind drunk. .
  10. 10. When late for appointments, it’s now much easier to say “Sorry, got lost.”

I’m always seeking more reasons to be happy with blindness, please add yours as a “Comment” below.

tio stib

You might also enjoy: Blind Man’s Bluff, Hanging with Happiness

Writing Well 2: 4,000,000 Books and Me

Recently I read a blog post that hit me like a bat on the back of the head. The author, Claude Forthomme, noted that a new book shows up on Amazon every 12 minutes and appropriately called this a self-publishing tsunami.

Claude’s post is now two years old and I expect the tsunami is now even larger. My guess is that Amazon currently has about 4,000,000 book listings.

In the middle of that flood of books are my two quite unnoticed self-published efforts.

That’s a lot of competition.

In another post, Claude shares that only 40 Amazon best selling authors actually make much money. 40 out of four million. I’m not sure what your math background is but even with my meager numbers skills, it seems obvious that the odds for financial success as a self-published writer are about the same as winning the lottery or me being asked to dinner with the President of the United States. It should be mentioned that I’m not his biggest fan.

My current book sales will not allow me to buy a first class ticket to fly to Paris, in fact, those sales barely allow me to buy an occasional beer to drown my writing career sorrows. Perhaps it’s time to throw out all the writing guru marketing crap that tells me that if I only work hard enough and smart enough and, of course, write something decent,, and then have a bit of good luck, I, too will be among the 40 best selling Amazon authors.

Not remotely likely, Grasshopper.

In Seth Godin’s insightful podcast, “Live at Carnegie Hall,” he poses the question of how young aspiring musicians can create successful lives amidst the flood of musical competition released by the same free and easy internet access that has changed the world for all of today’s creative artists. Seth suggests another path for life success. Instead of trying to compete with that tsunami of creative talent, build a tribe of 1000 followers for your unique artistic gift. He notes the careers of musicians who have small but dedicated followers. By focusing on uniquely serving a small group of people with similar passions, such artists have created simple and meaningful lives.

After listening to Seth, I considered my writing career and decided to change my focus to building a tribe of followers around my writing passion, young adult eco-fiction. Here I write for young minds still open and curious about the Natural world, a world that feeds my own soul. I’m building relationships within the eco-fiction community by reviewing other author’s books and being involved with discussion groups. I’m continuing my efforts to support the Save the Vaquita Porpoise! movement. And I keep asking myself the question, how can I best serve the needs of this community, my tribe while pursuing my own life path?

No, Ive not given up on building my writing platform, rather I’ve shifted it’s focus to serving my tribe. Sure, I’d like to sell more books, and I suspect this will happen over time. However, I’m not making plans to fly first class to Paris. I’d rather go fly fishing on the Rogue River.

Here are links to the above mentioned articles- (please make links noted below)

Claude Forthomme’s Blog-

https://claudenougat.wordpress.com/2014/08/19/to-self-publish-and-perish-buried-under-3-4-million-e-books/

https://claudenougat.wordpress.com/2016/02/07/only-40-self-published-authors-are-a-success-says-amazon/

Seth Godin’s Podcast “Live at Carnegie Hall”-

https://vimeo.com/155069902

Good writing!
Tio Stib Signature

Life Is Like A Broken Egg

Yesterday I dropped an egg. Actually, I didn’t drop it, I surmise it rolled unseen off the counter. I heard a noise near the floor. In a microsecond, my brain flashed through the possible causes of such a noise. At about the same time, my brain reached another conclusion. The toes on my right foot were also sending signals to my sensory center. Something gooey was down there.

A broken egg!

As I groped around cleaning the shattered shell from the floor and then its contents from my foot, I pondered the symbolic relevance of this event in my life.

Yes, I tend to get lost in my own world at times.

Perhaps, I wondered, my life is like a broken egg. Here I am, marching along unseen by most of the world and then, crash! I splat into eternity, possibly making a mess for someone else to clean up as I exit.

That’s one possibility.

My mind drifted off in other directions. I remembered a structures class where we dropped eggs in specially designed containers from a third story balcony. The object, of course, was to preserve the integrity of the egg. The challenge was to do this with as little material as possible. It’s no problem to put an egg in a big box of bubble wrap and drop it unfazed onto the floor below. The trick is to drop the egg, mostly naked, with the same result. Similarly in life, I thought, there’d been times I’d insulated myself with such things as work and selfish interest so that the rest of the world couldn’t touch me, and I couldn’t touch the people who cared about me because I was too closed off from them.

There have been naked opposite times when I was raw and open, times when I felt that life had run me over and left me for roadkill. Going bankrupt and watching friends die come to mind.

My lesson from these experiences: Sometimes it’s good to overprotect. Sometimes it’s good to hurt. The pain reminds me of happier times.

All this you may say, from simply having an egg hit the floor? Yes, and there’s more.

What if I’m like an egg? A hard, durable shell on the outside and a soft sticky mess inside. My outside, that part of me I show the world, is a lot like the shell of an egg. It’s quite resistant to general pressures, quite strong when grasped firmly. But, the shell has its weak points. It doesn’t do well with pressure applied to a single point. Yes, I have my buttons. I hate cleaning up other people’s messes, such as wiping up their broken eggs. I have no tolerance for fools, which is why politics disgusts me. The egg shell is also brittle. It doesn’t do well when landing on sharp objects. I explode when subject to sharp noises, and am even more violent when subject to the sound of barking chihuahuas.

All this from a broken egg.

My last thoughts on this surprisingly deep self-dialog. How do you crack an egg? I use two hands. Even so, I often make a mess of this simple action, sometimes striking a nearby surface so hard that the shell cracks open and leaves a trail of egg goo from there to the frying pan. (This is a clue to what I usually do with eggs, hinting at my limited cooking repertoire). Sometimes, when my mind is somewhere else such as now, I fail to hit the egg hard enough,it doesn’t crack, waking me from my reverie to initiate another strike on the shell. This usually results in the previously mentioned egg goo trail.

What does this say about my life? I tend to be overly cautious and conservative. Do I lack faith in my creative abilities to expand my egg cuisine? Maybe I’m just lazy.

One of my goals for the New Year is to learn how to crack an egg with one hand. I think this may take quite a few eggs. I’ve heard that gin fizzes are a good use for egg whites and an easy way to forget about life’s deeper concerns.

Like how my life is like a broken egg.

tio stib
2014, 2016, 2018

First published in January, 2014, but since I haven’t mastered the one handed egg crack yet, I decided to publish this again to remind myself of goals I’ve yet to attain.

You might also enjoy : Truth, It’s Coming

The Upside of Down, Making Light of Loneliness

Lately, I’ve noticed many lonely souls hanging out in sad solitude. The single seaters at Starbucks poking at their computers or pretending to read the newspaper, the odd person eating alone at restaurants, the commuter train filled with folks entranced by their mini-video screens with nary a glance at fellow travelers. It’s easy to spot the single folks, especially if you are, like me, one of them. Which makes writing this post so easy.

Let me put a different spin on loneliness and offer its advantages:

1. Living alone means making the bed is optional rather than submit to the control freak compulsions of a significant other.

2. Bing 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 Toasty 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…

from Tio Stib’s archives, the empty times before he met his wonderful wife. No, it wasn’t at Starbucks.