My Dementia Diary 68 – Imaginary People

My wife is spending more and more time in conversations with imaginary people. We’ll be eating at the dining table and she’ll suddenly start talking to her son. As he’s in Spain, I doubt he can hear her. She’ll walk outside and begin babbling with an unseen audience in the garden. Perhaps I’m being presumptive, perhaps she does see the people who are not there. She’ll be sitting at her desk working on a coloring project and I’ll hear her sharing drawings with her mother, who is watching television in Mexico.

At first, these conversations bothered me, feeling like another downward step with her deteriorating dementia. Then, I considered the positive side of such conversations-

First, one can have these conversations whenever one pleases, no waiting for family to call or a neighbor to knock on the door.

Next, by initiating such interactions, one gets to choose the subject of the conversation. And no need to wait until someone finishes their boring monologue before you jump in.

Also, these imaginary people, whether they be a parent, a friend, or a world famous celebrity , are going to listen to you, no matter what.

Equally important, if you don’t like the feedback you’re getting from these folks, you can simply abandon them without feeling rude or guilty. Heck, it’s your imagination.

I think my wife has adopted a perfectly reasonable strategy for dealing with a reality that does not fulfill her needs. She simply creates one that does.

If you don’t like your reality, make a new one. Seems like some wise person has already pointed this out, but please let this be my “ah ha” moment as I’m in need of some self gratification.

Do you think this blog and pretending that imaginary people all over the world care enough about me to listen to my thoughts is a similar alternate reality exercise?

Hey, it’s my delusion and I’m hanging on to it.

tio stib

You might also enjoy: Control Freaking, My Dementia Diary

 

My Dementia Diary 67 – Feeling Normal

We have two dear friends, neighbors down the street, who are quite resourceful at finding fun things to do on the cheap. This past week, they asked if we’d like to go to a free noontime concert.

“You bet!”

Friday noon found us in the center of a sunny downtown rooftop garden. comfortably shaded by trees, we sat on the lawn directly in front of the stage. While his wife took mine over to greet a mama duck and her ducklings in a nearby pond, my friend described the setting. 

It was magical, a garden paradise filled with trees and flowers surrounded by towering office buildings and All around us, the buzz of voices as the lawn filled up with other concertgoers.

The wives returned, the tuna sandwiches were passed out, and we munched happily to the delightful sounds of latin jazz. 

For a moment, there was no blindness, no dementia, just us in the midst of happy people enjoying summer music on a glorious day.

Sometimes, it’s just nice to feel normal.

tio stib

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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 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

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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 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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