Tag Archives: Alzheimers

My Dementia Diary 86 – Stump 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 “Stump 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

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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

 

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

 

 

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

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

 

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

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