My Dementia Diary 72 – Slip Sliding Away

Lately, I’ve felt my life has, in the words of Paul Simon, been “slip sliding away..”

slip sliding away
slip sliding away
you know the nearer your destination
the more you’re slip sliding away

-lyrics from song by Paul Simon

There’s an inevitability about my wife’s deteriorating dementia, only one way this story will end. Sure, we all will die, but the process with her is agonizingly slow.

Yes, I do my best to make the most of the moments when she is happy, when life is simple, when it’s possible to forget what’s really going on. But, then she puts her pants on backwards, asks me where the bathroom is, or asks me if I’m married.

There’s a balance I struggle to find each day, somewhere between grief and joy, the reality that there’s a caregiving job to do and gratefulness for all the blessings of our shared life together.

Some things are “slip, sliding away,” but we can still have a perfect day.

tio stib

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Do It Anyway – Mother Teresa

I offer the following words from Mother Teresa as a source of inspiration in difficult moments-

for children in Calcutta:

              People are often unreasonable, irrational, and self-centered.  Forgive them anyway.

            If you are kind, people may accuse you of selfish, ulterior motives.  Be kind anyway.

            If you are successful, you will win some unfaithful friends and some genuine enemies.  Succeed anyway.

           If you are honest and sincere people may deceive you.  Be honest and sincere anyway.

            What you spend years creating, others could destroy overnight.  Create anyway.

            If you find serenity and happiness, some may be jealous.  Be happy anyway.

            The good you do today, will often be forgotten.  Do good anyway.

         Give the best you have, and it will never be enough.  Give your best anyway.

         In the final analysis, it is between you and God.  It was never between you and them anyway.

-this version is credited to Mother Teresa. It is thought to have been based on The Paradoxical Commandments by Dr. Kent Keith.

 

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My Dementia Diary 64 – Holding Hands

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

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My Dementia Diary 61 – Back to Beginnings

I’ve been loved before, been involved intimately with other women, women with good hearts who cared for me. But I couldn’t let them in. Immaturity, insecurity, ego, fear, the stress of too much or too little work, etc., etc., excuses.

Or, to put it bluntly, it took me along time to grow up.

Yes, there were the other extremes, the women I did open up to, loved big, but still we failed. They were on their own journeys and our souls could not balance on the scales of love.

And so went my life lessons in loving, from ecstasy to despair, until I finally met her, my wife. Perhaps it was love at first sight, but it took time to melt through the layers of fear we’d accumulated to protect our hearts from pain.

Or, to put it simply, we grew back to being the children of love we are

Now, each day is a new beginning.

tio stib

You might also enjoy: My Dementia Diary 9 – Adventure Buddies, 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 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

 

Husband and Wife

in the beginning
we knew not where we were going
only
that we were going together

husband and wife

how can you know what that means
when dreams are blinding
when youth is fearless
when life is forever

we skipped down the yellow brick road
not a cloud in the sky
worries past by
lost
in our bubble of love

came curves and surprises
unexpected compromises
failures and broken words
a gathering of differences

darkening days

the same choice
again and again

husband and wife?

the same answer
again and again

husband and wife

two words now one

tio stib

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