My Dementia Diary 60 – Her Smile

I’ve not seen it for years
but I hear it, feel it
fluttering its butterfly wings in my soul
flitting through the garden of life’s memories
flying through my dreams

her smile

what would life be
without the heartbeat of love
without this boundless joy
this radiant light
that melts the clouds of doubt
the storms of despair

away

away

her smile

how can something
so long unseen
still fill my heart with hope

I am blinded by the bliss of love

 

tio stib

You might also enjoy: My Dementia Diary 13 – This Child Who Once Was Woman, My Dementia Diary

 

My Dementia Diary 59 – Growing Down

 

“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

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

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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 56 – Dealing with Resentment

“Tis the season of returning Spring vacationees, folks coming back from school breaks and family outings, eager to share the stories of their adventures. I force myself to smile and say, “how nice.” But it’s easy to be resentful.

Sure, cross country skiing through pristine trails in the mountains, drinking margaritas at sunset on a Hawaiian beach, or visiting the the wonderful museums in Washington, D.C., sounds like fun. 

If you’re not blind and caring for a wife with dementia.

Sour grapes? Totally, which is why I work hard not to fall into the resentment trap.

After all, how many people get up in the morning with money in the bank, no debt, and food in the refrigerator? How many people go for a leisurely walk each morning in a comfortable climate through a safe and friendly small town, past sweet smelling flowers and singing birds, and listen to the gentle lap of waves on a beach?

Our adventures may not be as grand and exciting as the returning vacationees, but  ours are no less delightful.

I’m better off being grateful for what we have, than resenting what we don’t.

tio stib

You might also enjoy: My Dementia Diary 53 – The Walk to Paradise Garden, My Dementia Diary

 

My Dementia Diary 55 – Socially Starving

I’m with my wife 24/7, all day, every day, all the time. I never paid any attention to our relationship reality when her mind was healthy and I could see. Being together was a constant treat, always new adventures to share, things to do together. 

And, we could talk, share ideas, questions, and breathe together in awe at a stunning sunset.

As much as we enjoyed each other, we were always organizing get-togethers with family and friends. We could drive, so making connections was easy. We were both functional, making shared meals with others  a simple thing to do at our place.

For a short time, our life was a wonderful balance of precious times together and special moments with others.

Such times are past. Our range of life options has collapsed. My wife’s dementia and my blindness have shrunk our social activities significantly. We no longer drive, so getting out to visit folks beyond our walking radius doesn’t happens unless someone comes for us. This occurs less and less, as I suppose, for most, that socializing with a demented woman and a blind guy is, at best, awkward.

Fortunately, my wife enjoys video calls with our kids, which they are considerate enough to make often. But, as any sort of intellectual, rational conversation is no longer possible with my wife, I find myself craving social contact.

Even though we rarely meet anyone at our local coffeehouse, we visit regularly just so I can hear the drone of other human voices, be near conversations, get vicarious pleasure from being in the middle of people living regular lives.

Slowly, I’m socially starving.

tio stib

You might also enjoy: My Dementia Diary 45 – A Different River, My Dementia Diary

 

My Dementia Diary 54 – Losing It

Last night, I lost it. Blew up. Exploded. Screamed.

It was a singular outburst of dramatic proportion, much more than the trivial event which triggered it, tripping on a misplaced shoe. One emphatic yell and it was over, but that was just the beginning.

My wife, who I know is emotionally fragile, takes any evidence that I’m displeased or simply not happy as an indication that I’m upset with her. My scream unleashed a storm of tears. Once started, there is no rational way to calm her down, it’s a matter of patiently waiting for her mind to reset. She’ll bounce angrily around our place, slamming doors, muttering to herself, and then, suddenly, she’ll come back, hug me, and ask me if I love her.

Of course I do, but I feel terrible that my outburst has so upset her.

I make every effort to avoid such venting, knowing the inevitable consequences. She is love on two feet, not capable of any thought but love for me, for anyone. It is impossible to be angry with her. But sometimes I get angry with being blind.

Then I’m angry with myself for causing her pain and vow to never do it again. 

But sometimes I just loose it.

tio stib

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