Tag Archives: caregiver

My Dementia Diary 69 – 6501

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There are about 6500 spoken languages on Planet Earth.

Based on what I heard come out of my wife’s mouth this morning, I believe there are now 6501.

“Tu mencha ki mo laga pimo meo woo?”

Some might dismiss such an utterance as mindless babble, but as she seemed to be waiting expectantly for an answer, I pondered what I’d just heard.

One possibility is that dementia had restructured her brain’s neural pathways so that she is now communicating telepathically with a life form in a far away galaxy. Following this language logic, I responded-

“Fongu ma blata wo bela vandu urgono!”

I held my breath, hoping my Earthling accent had not spoiled the alien dialect.

She hugged me and turned back to her coloring book.

I smiled. My “of course I love you, dear,” response had gotten through.

Yes, it has been suggested that these strange sounds may not be attempts to communicate with extraterrestrial beings.

dementia may be scrambling my own neural pathways. My retort is-

“Bong atu singu!”

tio stib

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

 

My Dementia Diary 67 – Feeling Normal

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We have two dear friends, neighbors down the street, who are quite resourceful at finding fun things to do on the cheap. This past week, they asked if we’d like to go to a free noontime concert.

“You bet!”

Friday noon found us in the center of a sunny downtown rooftop garden. comfortably shaded by trees, we sat on the lawn directly in front of the stage. While his wife took mine over to greet a mama duck and her ducklings in a nearby pond, my friend described the setting. 

It was magical, a garden paradise filled with trees and flowers surrounded by towering office buildings and All around us, the buzz of voices as the lawn filled up with other concertgoers.

The wives returned, the tuna sandwiches were passed out, and we munched happily to the delightful sounds of latin jazz. 

For a moment, there was no blindness, no dementia, just us in the midst of happy people enjoying summer music on a glorious day.

Sometimes, it’s just nice to feel normal.

tio stib

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

 

My Dementia Diary 64 – Holding Hands

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we have reached a place
where holding hands
is a pleasure
beyond orgasm

we have become
an incalculable oneness

after miles
years
of laughing, loving, sharing
a life together
I reach
expect
her soft, strong, tender fingers
to entwine with mine

my heart banishes all thoughts
that one day her hand
will not be there

tio stib

You might also enjoy: The Walk to Paradise Garden, My Dementia Diary

My Dementia Diary 59 – Growing Down

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“Oh, what a cute baby!”

If you, like me, have been blessed with baby experiences, you’ve often heard this phrase, or even uttered it yourself.

“Oh, what a cute corpse!”

Bet you haven’t heard that one though.

With too much time to think lately, it occurs to me that life’s two extremes, birth and death, get vastly different types of coverage.

Growing up is much more popular than growing down.

Consider the many different options for how to have a baby, from home births to dropping the newborn into a pool of water, then the  countless ways to approach and deal with the phases of child development. Of course, the celebrations of “firsts,” the first word, “dada,” (or was that “dodo?”), the first step, then walking, running, and on to the first day of school and driving a car.

Why do you think there isn’t the same attention and celebration paid to the steps in the death of a demented person?

“Oh, wow, can you believe it, mom just started babbling.”

“Oops, he doesn’t remember our names anymore, let’s have a beer.”

“Ewww, Mom didn’t find the toilet this morning.”

No, folks don’t pay nearly as much attention to growing down as they do to growing up.

Seems staring mortality in the face is scary.

tio stib

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

 

My Dementia Diary 58 – Good People

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We walk every morning. These excursions are usually noneventful, visiting the fishing pier to hear squawking gulls and honking geese, wandering around the marina with its hundreds of lonely yachts, or meandering through residential neighborhoods smelling a barrage of flowers. Our route depends on my energy level, which, because I’m not a morning person and don’t drink coffee, is never high. Needless to say, we don’t walk fast.

Imagine a slug crossing a road.

Given our relatively sedate walking pace, I was taken by surprise when my wife tripped and fell yesterday. Fortunately, I was holding her hand and this grip allowed me to ease her crash onto the sidewalk. Still, she was stunned and started crying as her knee began aching.

As I knelt to comfort my fallen companion, I heard voices.

“Are you okay?”

“Do you need help?”

It seems that two women, driving by separately in their cars, had seen our accident, stopped their vehicles, and hurried over to help.

Fortunately, when the initial shock wore off, my wife was able to stand, gingerly test her knee, and take a few steps.

“Would you like a ride?” offered one woman.

Feeling we would be okay, I thanked the good samaritans for their kindness and they returned to their lives as we slowly continued our walk

I can’t see them, but I take comfort in knowing we are surrounded by good people.

tio stib

You might also enjoy: My Dementia Diary 44 – Yours to Count On, My Dementia Diary

 

My Dementia Diary 53 – The Walk to Paradise Garden

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In 1946, W. Eugene Smith, a photo journalist who had been severely wounded in the latter days of World War II, was recovering at home, depressed and wondering if he’d ever pick up a camera again. On a quiet Spring day, he noticed his two young children, Pat and Juanita, walking outside in the garden. He followed them and the photo he took has comforted and inspired millions, including me.

I can no longer see this picture, but it is vividly etched in my memory, an image I often recall as my wife and I walk, hand in hand, discovering the delights of our small town world.

The Walk to Paradise Garden.jpg

“The Walk to Paradise Garden,” copyright W. Eugene Smith, Time/Life, Getty Images

tio stib

You might also enjoy: My dementia Diary 6 – A Shared Life, My Dementia Diary

My Dementia Diary 52 – Drowning in Sadness

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Because my wife’s dementia is deteriorating slowly, there are times when I forget it is happening at all. then, she says something-

“Do you have a wife?”

We were making breakfast when this question came up. My heart froze.

“Do you have a wife” she asked again.

I hugged her close and whispered, “you are my wife. You will always be my wife.”

“Of course,” she answered, kissing my cheek.

I am drowning in sadness.

tio stib

You might also enjoy: My Dementia Diary 48 – Both Sides Now, My Dementia Diary

 

My Dementia Diary 19 – Babbling

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At times, I’ve heard my young nieces, intent on playing with their dolls, babbling as they travel in imaginary worlds. This is quite normal for girls of their age. Not so for my wife, well into her sixties, who now talks incessantly to no one. She babbles.

If I work to understand what she’s saying, there are fragments of reality woven into larger stories. Mostly, though, her words are simply chatter, nothing that makes any kind of sense.

The good news is that her babbling is happy, sometimes she’s even laughing and whistling as she patters about. I’m quite glad about this because it’s obviously much easier to live with a joyful person than one who is angry and upset.

still, I do think about what is happening to her mind, the continuing deterioration of memory, the further separation from reality. then, I stop. Overthinking our situation does me no good. I’ve found it best to simply appreciate the blessings we still enjoy.

I count joyful babbling as one of those blessings.

tio stib

You might also enjoy: My Dementia Diary 18 – The Last Posole’ Party, My Dementia Diary

My Dementia Diary 18 – The last Posole’ Party

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this past weekend, my wife and I had a posole’ party for friends and neighbors. Posole’ is a traditional Mexican soup served for special occasions and we’ve hosted such gatherings many times. When we first started doing this, my wife would prepare the posole’ from a recipe she’d learned from her mom. As her mind has deteriorated, I’ve picked up more and more of the process until, now, I’m the cook, and my wife the assistant.

Part of the challenge is procuring groceries, a process requiring us to walk downhill to the store and lug the needed items back up the hill. There is always a second trip because I always forget something. I put these efforts down to healthy exercise. The larger difficulty is emotional and mental, staying patient and caring as my wife becomes more and more anxious about the coming event, asking the same questions again and again. Who’s coming? When are they coming? Why are they coming? Who’s coming?…

As much as she enjoys the thought of company, she is also fearful that someone is going to take her things, so she begins to hide and cover them up. Still, we got through this and by mid afternoon the posole’ is simmering on the stove, our home filled with the sumptuous aroma of good things cooking. My wife is excited but needs hugs and assurance that all is well. 

Guests eventually arrive amidst smiles and laughter and all gather around to share a delicious meal and the opportunity to connect with each other again. My wife is happy, basking in all the love of the moment. Yet, I notice that she is not able to enter into conversation, most topics are too confusing for her. She retreats to the kitchen to do dishes, babbling joyfully to herself.

The evening winds down, friends depart, my wife and I hug, feeling good for the party’s success, but too tired to clean up after it. 

As I sat sipping tea the following morning while my wife engaged in her favorite pastime, adult coloring books, I reflected. yes, the previous night’s event had gone wonderfully well and it had been a great gathering. My wife had enjoyed it. Yet, I was beat. Certainly, the effort had been worth it, but would I ever want to do it again? perhaps it’s time to quit on a high note.

Time will tell.

tio stib

You might also enjoy: My Dementia Diary 17 – Hiding the Cookies, My Dementia Diary

 

My Dementia Diary 17 – Hiding the Cookies

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My wife’s mind forgets many things but not cookies. when we enter the grocery store, “cookies?” is the first word off her lips, and she knows exactly where to find them in the bakery. Admittedly, I too have a fondness for such sweets, especially the chocolate chip ones, which is why cookies often find their way into our grocery bag.

The challenge comes when we return home, when we must resist the urge to eat all the sweets at once. I’ve tried rationing them, handing out a small amount each day, but, I soon discovered that the cookies were disappearing faster than my rationing had anticipated. Obviously, they were being eaten at other times. Obviously, my wife’s cookie needs were overriding my desire to limit caloric intake.

I decided to hide the cookie tin. First, I placed it in the cupboard, behind the cereal. The cookies kept disappearing. then, I put the tin on top of the refrigerator, assuming my wife would not see them. A few minutes later, she came up and offered me several. It’s hard to be secretive in a single room apartment.

My latest hiding place is in the oven, an appliance we never use. So far, the cookie stash has remained a secret, and the tin may even last the week. Apparently, the phrase “out of sight, out of mind,” bears some truth.

However, I no longer can blame my wife for the continuing cookie disappearance.

tio stib

You might also enjoy: My dementia Diary 16 – Good News, Bad News, Where Is My Solitude?, My Dementia Diary