My Dementia Diary 65 – A Caregiver’s Vacation

There were times when I missed her terribly, then exhaustion surrounded me and I slept. I slept without having to get up during the night to help her find the bathroom. I slept without thinking about how we were going to get through the next day. I slept knowing that someone else was caring for my wife and I could finally rest.

And so passed a week away with a friend, a week when our kids traveled from other countries to care for their mother and her dementia and give me a much needed break.

I didn’t realize how worn out I was until I awoke after one day away, shuffled to the dining table, and heard my friend say, “man, you look really tired.”

I was.

It had crept up on me like an unseen fog, surrounded me during the previous weeks and months. I knew it was there but I couldn’t call it out. I was my wife’s caregiver, she needed me, and our kids, lived in other worlds far away. But one day, when I blew up over some triviality, I knew I’d hit the “help needed” mark. I asked, the kids came, and I made my getaway.

I’m just one of over 15 million Americans who are caring for the estimated 5 million persons suffering from Alzheimer’s or some other form of dementia, all of us dealing with the emotional, mental, physical and financial stress of caring for someone whose mind is deteriorating in front of us.

We all need help. We all need a caregiver’s vacation.

I certainly did.

tio stib

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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 63 – Awkwardness

On our daily walks, she greets everyone with a smile and “good morning!” She is even more exuberant with children and babies in strollers, stooping to wave at them and babble excitedly in a combination of Spanish, English, and otherwise unintelligible, but happy,  sounds. 

The response is mixed. Most return the exuberant greetings, but some respond with silence. I can hear their minds whirring.

“Who is this crazy woman?”

I’m sure the awkwardness is not helped by my presence nearby, a blind guy poking about with a white cane.

Although most kids are understandably shy when confronted by strangers, my wife’s wholehearted delight in meting them usually melts their fears away and she often ends up slapping hands with  high fives before we go our separate ways.

And I’m reminded to let go any fears of embarrassment and simply enjoy life in the company of an angel.

tio stib

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

 

My Dementia Diary 62 – Faith

Faith. Faith Springer. A name that melts the heart.

I met her as we cared for a dying friend. Faith was a hospice volunteer and I remember she showed up each day, in any trying circumstance, with a smile and an unwavering commitment to serve. Struggling with my own fears about death, Fait calmed me. I felt humbled to be with her, blessed by the presence of an angel.

In the months after our friend passed, I often visited Faith, sat drinking tea in her garden, listening to her delighted descriptions of the birth of new flowers she’d planted the fall before, smiling as hummingbirds buzzed about our heads.

Later, as I cradled her head in my lap after she’d died, I was struck by how close we’d become in the brief times we’d shared together. Faith found a life path that brought her ultimate peace. She was the humble servant of love.

I find comfort in thoughts about my friend Faith, her beautiful soul, her overflowing heart. I am not nearly the kind and gracious being she was, but her memory inspires me to continue the daily work of loving.

Faith. Her name could not have been more perfect.

tio stib

You might also enjoy: A Friend Passes, My Dementia Diary

 

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

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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

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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

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