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 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

 

 

Breakfast of Memories

for fifty years they’d each returned
back to the same cafe
gathered round the same table
these small town knights
slowly sipping coffee
reviving the Camelot of their youth
alive again
in a breakfast of memories

stories swirled
more smiles than scars
the pranks, the mindless adventures
girlfriends real, love imagined
mountains climbed and races won
friends recalled and gone

they talked of how they’d loved this place
had never thought to leave
but life and time had swept them off
to chase their separate dreams

not one head turned to watch them go
the gray men and their ghosts
and silence roared to fill the void
of legends lost to most

tio stib

You might also enjoy: A Friend Passes, Life Journey Poems & Prose

A Season for Adventuring

rocketing through a cacti forest
past towering sentinels frozen in moonlight
night air and music blasting through the cockpit
singing with Cat Stevens
Riding on the peace train

I’m speeding into wildness at 3 a.m.
crossing into the unknown
road tripping
on the loose

Fall has called me forth
to a season for adventuring

ghosting through the morning mist
as day slides from gray to gold
I’m pulled by hunger into a small cafe
cradling a warm coffee cup
I spy the famished hiker beside me
demolishing a plate full of pancakes

he turns and smiles

Fall is freedom
the work is done, the harvest in
I’m on the road again

mornings are cool now
Fall brings a sharpened awareness
a time to wipe fog from my glasses

as growing sunlight melts shadows from the river
cold water swirls about my shivering thighs
I cast to a distant riffle
the line lays out softly
the fly disappears in a splash

lost in the sweet perfume of pine sap
following a dusty trail of memories
the buzz below me sounds familiar

Jeez!

Damn! Helluva rattlesnake!

all those blue highways
all those maps, long before GPS
all those little country stores
all those stops to buy a soda, asking directions

where the heck is Boggan’s Oasis?

and the magic of those unexpected moments

chasing wild horses through a sea of purple sage
eyeing eagles falling from heaven in their mating aerobatics
cresting a final ridge to discover Shangri-La
an azure lake sparkling in an alpine meadow

immersed
alone
in a hot springs pool
steam rising into nothingness
feeling forever in all directions
soul steeped in gratitude
as sky slips from gold
to pink
to gone

I will not travel these roads again
but they will haunt my heart when
once again
Fall calls the vagabond
to a season for adventuring

tio stib

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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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My Dementia Diary 26 – Over the Rainbow

Some years ago, I was listening to the radio and the announcer said he’d just heard the most amazing voice and he had to share it. The voice was that of Israel Kamakawiwo’ole, an Hawaiian giant known as “Iz” to his many fans. I listened to his rendition of “Somewhere Over the Rainbow” and “It’s a Beautiful World” and cried. I felt like I was hearing Heaven singing to me. 

I often turn to music for solace and inspiration and count among my many blessings my collection of musical artist friends.

Here’s Iz singing as he plays the ukulele, which nearly disappears in his huge hands.

Yes, I do believe each of us has a special gift to share with the world.

tio stib

You might also enjoy: My Dementia Diary 25 – Life in Reverse, My Dementia Diary

My Dementia Diary 57 – Healthy & Happy

 

I was once obsessed with lists. I would rise long before the sun to be at work by 5:30 a.m.. Fueled by a cup of hot chocolate, I’d dive into my “things to do,” twenty was not a daunting number, before the rest of the office arrived at 7”30. Focused and disciplined, I checked off my cumulative responsibilities one by one.

I admit to a supreme sense of satisfaction on those days when I managed to complete these tasks before the “good mornings!” of fellow workers turned the rest of the day into chaos.

Was I really so wrapped up in being dutifully responsible that I sacrificed having any sort of other life?

Seems so. I do remember moments during that time when I dreamed of sleeping in, fantasized about a day with nothing to do, no budgets to balance, no employees to guide, no monthly reports to issue. 

As the wise man said, “careful what you wish for.”

My career path has veered from architect to caregiver. There are no staff to manage, no urgent tasks to accomplish, no reason at all to get up at 5:30 in the morning.

Except when my wife needs help finding the bathroom

the multiple item “to do” list has disappeared. The day has been reduced to two priorities-

Healthy and happy.

that’s my daily work, keep my wife healthy and happy.

Has a delightfully simple  ring to it, don’t you think?

tio stib

You might also enjoy:My Dementia Diary 49 – Happiness, My Dementia Diary

 

My Dementia Diary 25 – Life in Reverse

Noting my wife’s continuing mental deterioration from rational adult to simple minded child, I was reminded of a piece I saw George Carlin do some years ago. Bless his brilliant and irreverent mind, George has moved on to the great comedy stage in the sky, but he leaves many laughs behind him. I think his piece on “Life in Reverse” is all-time hilarious. Wouldn’t it be great if life actually worked this way-

tio stib

Life in Reverse By George Carlin

In my next life I want to live my life backwards.
You start out dead and get that out of the way.
Then you wake up in an old people’s home
feeling better every day.
You get kicked out for being too healthy,
go collect your pension,
and then when you start work,
you get a gold watch and a party on your first day.
You work 40 years
until you’re young enough to enjoy your retirement.
You party, drink alcohol, and are generally promiscuous,
then you are ready for high school.
You then go to primary school,
you become a kid,
you play.
You have no responsibilities,
you become a baby until you are born.
And then you spend your last 9 months
floating in luxurious spa-like conditions
with central heating and room service on tap,
larger quarters every day and then Voila!
You finish off as an orgasm.

I rest my case.

by George Carlin, 1937-2008

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My Dementia Diary 24 – A Season of Endings

“Too warm!” she told me, standing in the shower.

I realized she was no longer able to adjust the water temperature on her own, the control knob confused her. I turned the knob.

“Better,” she said.

It was another sign, another slip, another reminder of our downward journey together in a season of endings.

We’ve reached a point where what used to be easy, things that were once simple to do, are no longer so. Such changes are not obvious to her, but are painfully so for me. We are slowly sliding down to a place from which there is no return. Knowing this, I’m making every effort to enjoy the precious things we can still do together.

Recently, we took a train trip north to a small town in Oregon for a family reunion. We’ve done this before, and, as train travel is more flexible than buses and planes, it had been enjoyable. However, this time, she was more fearful, uneasy, not able to relax in a setting so different than our home world. This unease continued when we met up with family at a beautiful lakeside lodge. Ultimately, we had a good time, but I was aware of how much my wife’s ability to adapt to different environments had diminished in the past year. I was also aware of how difficult it seemed to be for other family members to interact with us. It occurred to me that it was quite likely the last family reunion we’d attend.

Philosophically, lives end, we all will pass on. Emotionally, this fact is difficult to accept. I suspect that most of the family awkwardness with interacting with us was their own fears about mortality. I wish there could have been more open conversation about this subject, but it didn’t happen. 

Youth does not want to think about the season of endings, but this is a luxury I cannot afford, so I focus on gratitude for the wonderful life we’ve been blessed with, taking each ending in its turn as an opportunity to be thankful for what we’ve had and what we still have.

“I’m taking a shower with shampoo!” she tells me with delight.

Yes, we are blessed.

tio stib

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My Dementia Diary 23 – Thank You! Very Good Day!

I am not, by any measure, a so called “morning person.” rather, as insomnia keeps me up until the wee hours and deep sleep is hard earned, I am defiantly resistant to being awakened before my anointed hour, which is never earlier than eight a.m.. Fishing trips are an exception, but that’s another story.

My wife’s waking behavior is completely in contrast to my own. Most often, she is up and buzzing around long before I’m even close to consciousness. Being hesitant to open my eyes, her active presence is usually announced by the sound of her voice.

“Thank you! Very good day!”

These words have become her mantra, used anywhere and anytime for anything that strikes her fancy.

A drawing she has just completed coloring, “Thank you! Very good day!”

Cutting rose buds for the dining table, “Thank you! Very good day!”

Hummingbirds gathering at the feeder, “Thank you! Very good day!”

Her morning cup of coffee, “Thank you! Very good day!”

Meeting people on our daily walk, “Thank you! Very good day!”

There is no end to how and where these words are used, which leads me to consider  that if our vocabulary was limited, if we only had a language of five words, my wife’s choices would do quite well.

“Thank you! Very good day!”

tio stib

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