Tag Archives: Alzheimers

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My Dementia Diary 88 – Our Tightrope

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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

 

 

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My Dementia Diary 87 – Harold!

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“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

 

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My Dementia Diary 86 – Stumped Town Dementia and Death Doulas

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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

 

 

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My Dementia Diary 85 – New Friends, Sort Of

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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

 

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

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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

 

 

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My Dementia Diary 83 – Hold On

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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

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My Dementia Diary 82 – Islands of Loneliness

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In the 2000 film “Cast Away,” Tom Hanks stars as the survivor of a plane crash who finds himself alone on a deserted island. in the Pacific Ocean. After weeks of working to physically survive, he then faces the deeper  challenges of human existence, loneliness, hope, and faith.

To deal with his isolation, he begins a relationship with a volleyball, which he names Wilson and thereafter discusses everything going on in his mind with this unspeaking acquaintance. His hope is bolstered by a picture of the girlfriend he dreams of marrying. His faith in his ability to adapt and solve life’s problems wanes in time and, giving up, he tries to kill himself. Fate steps in, he fails, then recommits to finding a way off the island.

Yes, he escapes, but the ending isn’t what you’d call “Hollywood Happy.”

How do my wife and I compare to Hanks and his cast away life?

Certainly, we are cast aways too, a couple living with a disease that nobody around us wants to talk about.

Dementia. It’s difficult, it’s depressing, it’s death.

Even though we’re surrounded by a sea of other souls, none of them want to stop chasing their own dreams to visit our little island. True, I was one of them once.

So, like Hanks, we, mostly me, adapt. For now, I’m better off than Tom, who only had a volleyball to talk to. My wife can still smile, hug, and babble back at me. Also, the diet on our island, with occasional burritos and ice cream bars, is much better than Hanks menu of crunchy roasted crabs. 

However, like millions of other caregivers and their dementia stricken loved ones, we won’t be escaping our island of loneliness to return to the wonders of a world left behind.

No “Hollywood Happy” endings here. But I’m keeping the faith that there will be moments of beauty, grace, and love.

That’s the best I can do.

tio stib

You might also enjoy: Hope, My Dementia Diary

 

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My Dementia Diary 81 – Today’s Gratitude List

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It’s too easy to forget all we have to be grateful for so I’m stopping to do so today-

Today’s Gratitude List-

My wife’s constant joy for life, and, in spite of her diminishing mental capacity, her ever present love radiating out to everyone she meets.

Our excellent physical health, strong and vital bodies that take us out into the world on foot each day.

Family and friends who reach out regularly to share their love and care for us.

A small town life that is safe, convenient, and filled with beauty.

A home that fits us in every way.

Money in the bank, no debts, and enough income each month to meet expenses.

Health insurance, including a caring and intelligent doctor who cares for both of us.

Advanced technology that lets us connect with friends and family and allows me to write and publish for a worldwide audience.

Fresh tomatoes for BLTs.

The smell of roses by the door.

My wife’s delighted descriptions of hummingbirds buzzing about the feeder.

A treasure chest of wonderful memories to light up dark days.

Lastly, dementia is taking my wife’s mind slowly, enabling us to make the most of the life we still have.

Yes, I could go on and on, but I’ve written enough, thought enough, to be reminded that despite our life challenges, we’ve got a lot of good going for us.

tio stib

You might also enjoy: High on Gratitude, My Dementia Diary

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My Dementia Diary 80 – Teeter Tottering

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Have you ever been on a teeter totter, that long board balanced in the middle where kids sit at opposite ends and bounce each other up and down? If the two kids’ weights are about equal they can take turns levering the other into the air. However, if one kid is much heavier, the lighter one can find himself stuck up in the sky.

That’s me right now, stuck up in the air, in teeter totter purgatory, because my wife’s needs are overwhelming my own and I can’t get my feet back on the ground.

When I started this solo caregiving gig with my dementia afflicted wife, she was still quite functional. She could take care of her personal hygiene, lose herself for hours in painting projects, and sleep through the night. Then, painting became too complicated and we switched to coloring books. Now even coloring simple designs is more than her mind can handle and she constantly turns to me for attention.

Her nighttime neediness has also increased. Once a sound sleeper, she now gets up repeatedly and prods me awake to help her find and use the bathroom, to change clothes, to calm and comfort her after nightmares. This new pattern deprives me of needed rest, leaving me tired and less able to meet the increasing demands for her daytime entertainment.

The balance of my wife’s needs and my own is way out of whack. I need to get some heavy help for my side of the teeter totter. Once more, it’s time to adapt.

tio stib

You might also enjoy: Yours to Count On, My Dementia Diary

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My Dementia Diary 79 – Our Anniversary

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Today is our wedding anniversary. Although my wife’s mind no longer recalls that special day, I remember the vows we made to each other-

to have and to hold
from this day forward
for better for worse
for richer for poorer
in sickness and in health
until death do us part

I don’t think anyone can really anticipate “for better for worse, in sickness and in health.” You just do your best and gut it out when the stuff hits the fan. That said, I don’t think you can really appreciate the intimate immensity of committed love until you have suffered through such trials with a partner.

What I most remember about our wedding day was thinking that my wife was the most beautiful woman in the world and that I’d never seen her so happy.

I’m now blind and she has dementia, but my wife is still the most beautiful, radiantly joyful woman I’ve known. She has pushed me to be a better man and given me more blessings than I’d ever imagined.

Happy anniversary to us!

tio stib

You might also enjoy: A Mirrored Smile, Life Journey Poems & Prose

My Dementia Diary

marriage, caregiving, dementia, Alzheimer’s, commitment, partnership