Category Archives: My Dementia Diary

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My Dementia Diary 66 – Retreating

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For months, we’ve been retreating, letting go, moving on, saying “adios” to activities, friendships, and family events that no longer fit us.

I say “we’ve been retreating,” but, in truth, it’s only me.

 there is usually a moment of realization, a painful awareness that our life no longer matches up with the lives of others. I decide to stop attending a particular gathering because the combination of my blindness and my wife’s diminishing attention span makes it awkward for us to participate. I decide to avoid family get togethers because the adults can’t deal with my babbling wife and the kids find us boring. I stop visiting friends because my wife’s constant need for attention makes conversation with others impossible.

More and more, we are by ourselves in our small world. Yes, we are fortunate that this world is comfortable, safe, and offers us pleasant opportunities to walk amidst beautiful surroundings. We are also fortunate that there are a few warm hearted, compassionate folks who welcome us into their lives. Still, I can’t pretend that I don’t find this retreat process depressing. 

More and More, I feel like I’m backing into the future, spending more time looking behind than ahead, thinking more about all the things we can no longer do, than appreciating the possibilities we still have.

Yes, I have an attitude problem. I am still struggling with letting go of what blindness keeps me from doing and accepting the reality of my wife’s dementia. In dark moments, find comfort in the stories of other bloggers in similar situations and their supportive feedback.

I have survived and grown through many perilous and difficult times and trust these experiences have prepared me for the challenges I now face.

But I’ve never climbed a mountain like this before.

tio stib

You might also enjoy: Which Mountain to Climb?, My Dementia Diary

 

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My Dementia Diary 65 – A Caregiver’s Vacation

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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

You might also enjoy: A Morning Kiss, My Dementia Diary

 

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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

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My Dementia Diary 63 – Awkwardness

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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

 

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My Dementia Diary 62 – Faith

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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

 

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My Dementia Diary 61 – Back to Beginnings

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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

 

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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

 

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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

 

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My Dementia Diary 57 – Healthy & Happy

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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

 

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My Dementia Diary 56 – Dealing with Resentment

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“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