My Dementia Diary 66 – Retreating

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

 

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

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

 

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

You might also enjoy: The Walk to Paradise Garden, 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 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 51 – Visiting Mom

She wants to walk over and visit mom. The problem is that my wife’s mind no longer realizes that mom is 2000 miles away in another town, another country.

No need to try and explain this, her mind does not comprehend rational logic. Once more, I’m challenged to adapt to the current reality. 

“Would you like to talk with her?” I ask my wife.

If the answer is affirmative, I dial up mom on the phone and the ensuing conversation seems to resolve the need to connect. However, if we’ve already called mom three times in the last few hours, saving money and mom’s sanity requires another option.

“Sure, let’s walk over to Mom’s,” I’ll suggest.

So we bundle up and go outside and by the time we get to the street, my wife’s mind has moved on and we’re talking about birds, or neighbor kids, or new blossoms on the peach tree.

I find that I enjoy our life together much more when I’m open to it being a continuing adventure of challenges and surprises.

tio stib

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

My Garden of Words

there is a porch 
in my mind’s quiet place 
broad, shaded, open 
where I sit and look out 
at my garden of words 

listening 
enjoying 
watching words waving 
in the gentle breeze of memories 
each seed 
an echo 

of planting 
caring 
weeding 
hoping 

waiting 

wondering 

would faith be rewarded 
would something glorious appear 

sometimes
unexpected beauty blossomed 
sometimes 
no matter the effort expended 
new life never sprouted 

yet still I garden with words 
planting, caring, hoping 
sitting on my porch each day 
marveling at the miracle 
of creativity 

tio stib

You might also enjoy: River of Words, Life Journey Poems & Prose