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

 

 

The Memory of a Single Rose

has love been worth
the silly fears of youthful years
the agony and sobbing tears
rejections, dejections, emotions tossed
plans and hopes and dreams now lost

has love been worth the unmet wants
the emptiness of sensual haunts
the births, the deaths
the final breaths
the agony of cried regrets

all this for a glimpse of bliss
the rapture of a secret kiss
a sudden smile
a soft caress
the eternity of souls confessed

and so I ask a broken heart
as time tugs our love apart
was it worth the cost
the moment’s flame?

ah, yes
sighs the sent
the sight
the memory 
of a single rose

again

20100531 Roses from Laura 002

tio stib

You might also enjoy: My Daily Lama, She Thinks Pyrex is Perfume

My Dementia Diary 82 – Islands of Loneliness

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

 

My Dementia Diary 81 – Today’s Gratitude List

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

My Dementia Diary 80 – Teeter Tottering

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

My Dementia Diary 79 – Our Anniversary

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

My Dementia Diary 78 – I Die Once More

lost in the bliss of slumber
I’m prodded awake
hear her pleading

help me

she stands beside the bed
naked
shivering

help me

it’s 4 a.m.

she has shed her pajamas
and there are no words
no rational arguments
nothing will quell her demented need
to get dressed and go for a walk

I will myself up
take her arm gently
lead her to the closet,, a chair
and begin, as we’ve done so many times
to dress her
underwear, socks, shirt
guide her legs into pants
her arms into a jacket
I place shoes by her feet
and leave to use the bathroom
relieving myself,
the same question haunts me
how did I offend the gods
what did I do
to create this nightmare
I hear a whimper
she’s standing in the doorway
clothes discarded
naked in the night

my soul erupts

SCREAMS!

she bursts into tears

in anguished remorse
I die once more

tio stib

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

Category” My Dementia Diary

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

My Dementia Diary 77 – The New “Normal”

We don’t do sudden impulse road trips anymore, those wild moments when we would throw stuff together, hop in the car, and head out for parts unknown. Instead, a rash trip for us is a walk down to the drug store for an ice cream cone.

We don’t do drop-in gatherings with friends now, those spontaneous get togethers where wine and finger food would just show up and the buzz of excited conversation filled a shaded patio. We don’t get those invitations anymore. Do you think the fact that most of what comes out of my wife’s mouth is babble has something to do with this?

There are no longer any discussions about what we’ll do today, or this week for that matter. Such rational exercises are not possible with her dementia. All the planning is on me and I keep things as simple as possible.. While predictability used to annoy me, I now find order and stability comforting.

I’m having difficulty letting go of the delusion that a blind guy and his wife with dementia are a “normal” couple. Fortunately, life keeps slapping me in the face, reminding me that we’re not.

The truth is, we’re both disabled, we’re older than most of the people around us and have a radically different lifestyle. . We don’t drive. We don’t go on vacations, don’t participate in any community organizations, and our kids are grown and gone.

In truth, to most everyone else, including family members who live nearby, we’re flat out boring and awkward to deal with. So they don’t.

I’ve been pretending, hoping, this was not true, but, it’s time I face the facts.

The new “normal” is that we’re not.

tio stib

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