My Dementia Diary 89 – How to Love a Monster

At 7 a.m. this morning, my normally angelic wife turned into a she devil. For whatever reason, the meds which have kept her mind calm for days, stopped working. suddenly she was agitated, paranoid, confused and the only thing she wanted was to go see her mom, the mom who lives one thousand miles away in Mexico.

And I was blocking her escape, standing in front of the door, keeping her from running outside into the cold, rainy morning.

She erupted, screamed for her mother to help her, started pounding on me. I bit my tongue, remained passive yet firmly in front of the door, finally wrapping my arms around her and flooding her head with calming words. She is quite strong, especially in an agitated state, and it was all I could do to hold her firm until she slowly began to relax.

I let her go and she fumed and ranted about the apartment, finally breaking into sobs and tears. I gently guided her to the sofa and we sat beside each other as I held her close. 

Eventually, she was calm enough for me to suggest we go for a walk, which she agreed to. I’ve found that a complete change of environments is the only sure way to flip her mind from a troubled to a peaceful state.

While walking, she asked me if she was a bad person.

“No, you’re beautiful and loving.”

But as I said these words, I remembered the pain and anguish of her morning outburst.

It is very hard to love a monster, but love is the only way to make this journey.

tio stib

You might also enjoy: Sometimes She Knows; My Dementia Diary

My Dementia Diary 88 – Our Tightrope

Each day, my wife and I do our dance across an emotional tightrope. the goal is to get all the way across during the day, and then all the way back during the night, all the way without falling. 

These two cycles are based on the effectiveness of her day and night medications. When the little pills do their magic, the dance is relatively easy, she’s in a good mood or tired and she’s easy to lead. But, dancing on an emotional tightrope is precarious. There is little room for error. If I say the wrong words, do something that her mind takes negatively, break the routine that she’s come to expect, she is suddenly off balance, agitated, instantly filled with fear and often belligerent and aggressive.

Once this chain of behaviors begins, I can’t stop it.

We fall.

We fall and crash. There is no safety net. She becomes a person I do not know and I become a husband doing his best to stay calm and reassuring, keeping her from hurting herself, all the time beating myself up for whatever I did to trigger the pain she is going through. 

We never recover quickly from these falls. Sometimes it takes thirty minutes, sometimes an hour, sometimes half the night. She slowly becomes more tranquil, quiet, peaceful. Eventually she will reach out and say she loves me.

I hold her tight and say, “I love you.!

Then we climb back onto our tightrope and start the dance again.

Growing up, I never once thought about running away to join the circus.

The circus, though, seems to have found me.

tio stib

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

 

 

My Dementia Diary 87 – Harold!

“Harold!” shrieked the voice across my neighbor’s yard.

‘Harold, get in here!”

I and certainly everyone else in the neighborhood now knew that Harold was being called. To my surprise, the man himself, standing on the other side of our common fence watering his flowers, did not seem to notice. In fact, there was not the slightest trace of recognition that he’d heard his summons.

Smiling, Harold said, “that corn of yours is looking mighty fine, almost ready to pick.”

I nodded in agreement.

“Never had much luck with vegetables, so I just stick with flowers,” he added, smiling with pride at his little patch of pansies.

Harold was retired, had a nice head of white hair, excepting for the bald spot which was always covered with some sort of hat, and he was blessed with an eternally pleasant personality. I never knew a mean word to escape from his mouth. I always enjoyed our over the fence chats, particularly when his wife was not nagging him.

“Harold, get in here right now!”

 As he continued drowning his flowers, I realized that while anyone within a block of his house could hear the wife’s belligerent commands, Harold had tuned her out. Not a hint of displeasure, a grimace, nothing showed on his face but that benign smile. Yet his hearing was fine, as evidenced by our continued conversation.

“Fine summer day, don’t you think?” he asked.

“Harold, now!”

I think of Harold’s beatific tranquility when my wife’s pestering neediness is about to drive me nuts. I imagine myself standing beside him watering flowers with a big grin on my face.

But, I’ve yet to achieve Harold’s state of Zen peace.

A few years after his wife met her demise, Harold passed on as peacefully as he’d lived. Out driving, he had a heart attack and his car slowly slowed and stopped against a power pole. I sometimes wonder if, as Harold approached those pearly gates, he heard a familiar voice yell out-

“Harold, get in here now!”

Does God have a sense of humor?

tio stib

You might also enjoy: A One Act Play, My Dementia Diary

 

My Dementia Diary 86 – Stumped Town Dementia and Death Doulas

I connect with other bloggers who focus on the challenges of living with dementia. Their stories and insights help me navigate the bumpy road we share. I’ve found the woman who writes “Stump Town Dementia” to be particularly honest, humorous, and helpful. She recently shared information on “death doulas,” a source of dementia caregiving assistance I’d never heard of before.

Do you know what a “death doula” is?

Here’s the link to “Stumped Town Dementia”-

https://www.stumpedtowndementia.com/post/death_doula

tio stib

You might also enjoy: My Dementia Diary 75 – Sleepless in Benicia, My Dementia Diary

 

 

My Dementia Diary 85 – New Friends, Sort Of

I’ve discovered that our disabilities are providing us unique ways to meet people-

Sitting outside a coffee shop, my wife and I sipped on our favorite hot drinks while we breathed in the gorgeous Fall morning. Suddenly, my white cane leapt from my lap.

Surprised, as I’d heard no one approaching, I was about to start searching  when I heard-

“No Lucky, that’s not yours, we need to give it back.”

And so I met Lucky, the Labrador puppy, who’d decided that the red ball on the end of

my cane was something he had to fetch. His apologetic owner and I had a good laugh.

My wife has her own way of getting attention., as demonstrated by this encounter in front of the same coffee shop-

“Hola Abraham!”

“Excuse me?”

The young man stopped in front of the door and turned to face my wife.

She repeated, smiling I’m sure, “hola Abraham!”

Seeming to understand, the young man moved closer to her and said, “hello, how are you?”

She unleashed a torrent of Spanish babble.

Unperturbed, the young man graciously replied, “thanks, it’s a pleasure to meet you too,” and continued inside.

Such happenings are more frequent now, where my wife mistakes others for our son or daughter, who, living in other countries, are nowhere near our neighborhood. She’ll jump up, wave, call out expectantly. 

The responses are varied. Some ignore her, some wave back and continue on, a few, like the young man mentioned above, graciously stop and talk with her. Occasionally, I’ll share that she has dementia and thank these kind folks for stopping.

Such experiences are among the side benefits of living with blindness and dementia. True, none of these brief acquaintances have become friends, but the graciousness of some has given my wife precious moments of happiness.

We’ll take all we can get.

tio stib

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

 

My Dementia Diary 84 – If You’re Not in the Obits, Eat Breakfast

Getting old? I don’t think about it. Never have. My life has been a constant series of opportunities, relationships, and “projects,” goals with timetables that fully engaged all of me until they were done.

Then there were new opportunities, new relationships, and new “projects.” Sure, there have been slow times, even some depressing ones, a good share of those relationships and “projects” didn’t turn out as I’d hoped. But I survived, did my best to learn from mistakes, and moved on.

And never thought about getting old.

It’s not that I had any delusion about living forever, I’ve always accepted that my life would end. That’s obvious, why make a big deal about it. Death is going to happen, I’ve watched it happen to people close to me, I’ve already been a widow once. Yes, being blind has perhaps helped me avoid much thought about aging as there’s no sign of it on my face in the mirror in the morning.

There’s no face.

But a recent documentary, “If You’re Not in the Obits, Eat Breakfast,” has caused me to pause and reconsider this aging thing. In this film, Carl Reiner, the ageless comedian, interviews a bunch of folks in their nineties and beyond, all of whom are living active, purposeful and happy lives.

90 years old. 

Jeez! That’s old, really old.

Both my dad and my grandfather lived to be 82. I remember my dad at his last birthday party, relatively healthy, enjoying an evening with friends. I didn’t have the slightest clue he’d be dead in three weeks. A little heart attack, some complications, and gone. Just like that.

Looking back, I wonder if he just decided it was time to go, there was nothing left he wanted to do. I’ll never know but now I’m thinking about where I’ll be when I hit the big 82. Don’t worry, it’s a few miles down the road so I fully expect this blogging thing to carry on. 

If I reach that milestone, wIll I decide it’s time to go or will I, like carl Reiner and his youthful buddies, keep seeking out new opportunities to live a full and happy life?

I like to think I’ll keep on going, but first I need to make the most out of my caregiving adventure with my wife and her dementia. That’s going to be a long haul.

Here’s hoping there will be light at the end of that tunnel and I’ll still be around to eat breakfast.

tio stib

You might also enjoy: Life in Reverse, My Dementia Diary

 

 

My Dementia Diary 83 – Hold On

hold on

hold on while her hand
is still soft
still warm
still pulsing with
the memories of golden times

hold on

hold on to the fragments
the scant threads of hope
that somehow the disease
the unseen darkness tearing her away
will disappear

hold on

to the magic of her smile
to the joy of her laughter
to her fingers caressing my face
to the thrill of her scent in my soul

hold on
to the words she whispers in my ear

hola amor

hold her close on that seaside bench
as waves lap gently at our feet
and there is only now and us and love

forever

hear the call
a lonely train
bound for another world

hold on

it will not stop here today

tio stib

You might also enjoy: Morning Bliss, My Dementia Diary