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My Dementia Diary 27 – What’s Your Name?

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Some mornings I wake up and wonder if it’s just a bad dream, everything’s fine, My wife’s mind is not slipping away. Then, something happens that reminds me that the bad dream is true.

“What’s your name?” I heard her asking.

I looked around and found her standing in front of a mirror mounted on the bathroom door.

“What’s your name” she asked the image in the mirror.

Then, she looked behind the door, wondering where the image was.

No, it’s happening. My wife has dementia and her mind is slowly deteriorating. She puts the electric toothbrush in her mouth but doesn’t remember to turn it on, trying to brush her teeth manually. She sprays herself with air freshener rather than perfume. She puts clothes on and takes them off and puts them on again, and again, until I help her sort out what to wear. She is more and more needy, immediately fearful if she cannot find me.

But, in the midst of this downward spiral, she keeps smiling, keeps loving, keeps reminding me of why she is so precious to me.

As I write this, I find myself on the verge of tears. I want to cry, but I know I can’t. she is watching me and any sign that I’m upset, sad, disturbed, sets off a flurry of questions,

“What’s the matter?? Why are you sad? Do you love me?”

I smile and assure her, “yes, I love you dearly.”

And I wonder if the woman who used to be here is hiding behind the mirror.

tio stib

You might also enjoy: My Dementia Diary 26 – Over the Rainbow, My Dementia Diary

My Dementia Diary 22 – I’m Taking a Shower!

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“I’m taking a shower,” she squealed with delight as my wife scampered past and into the bathroom. 

Her joy in anticipation, the sheer radiance of her being left me speechless.

I was filled with the exuberant thrill of being alive that only children can experience. I was overwhelmed by the knowing that the woman who I had married was no longer here. She would never be here again, replaced now by a beautiful child being led to bathe because she no longer remembered to do so herself.

I heard music playing in the background, John Denver singing-

“Sweet, sweet surrender, live, live without care. Like a fish in the water, like a bird in the air.” ”

I cried.

There are times when I am absolutely certain there is a power, a force of being, a love beyond understanding that binds all life in Oneness.

Namaste’

tio stib

You might also enjoy: My Dementia Diary 21-As Good As It Gets, My dementia Diary

My dementia Diary 21 – As Good As It Gets

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We’ve just come back from a month in Mexico, a time of surviving myriad family dilemmas rather than any sort of vacation. Upon returning to what we call “home” in our little town at the mouth of the Sacramento River, I’d collapsed, exhausted, into bed, and it was twelve hours later before I pushed myself up to greet a new day. We went for a morning walk.

I was immediately struck by how simple and pleasant life was in this Small American town. There were no buses honking at us, no train horns blaring, no threat of being kidnapped or robbed, no foul smells from open sewers, no garbage to sort through in an endless Mexican obstacle course for the disabled. Instead, there were sidewalks without potholes, stoplights where cars halted for pedestrians, singing birds and plants and flowers everywhere. And I could smell the sea air.

We sat on a favorite bench on the waterfront and felt the sea breeze caress our faces, hearing the lap of small waves on the rocky shore. The fronds of a palm tree swished the air above us. I thought back on the past month, the turmoil and seemingly endless days and nights, the world where I felt so alone and lost.

We went so that my wife could spend time with family. we went because I’m not sure we’ll ever go back again. They all noticed how her mind had deteriorated. They all heard her babbling, understood that she is less and less able to connect with reality. And that was good. There is no more hiding from the truth. Someone they all love dearly is slipping away.

And so that time was good. And so, my wife and I found ourselves sitting on a bench in the warm sun, surrounded by tranquility, and she put her hand in mine and said,

“I love you.”

I squeezed her hand and thought, this is as good as it gets.

tio stib

You might also enjoy: My Dementia Diary 20-Surrendering, My Dementia Diary

My Dementia Diary 18 – The last Posole’ Party

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this past weekend, my wife and I had a posole’ party for friends and neighbors. Posole’ is a traditional Mexican soup served for special occasions and we’ve hosted such gatherings many times. When we first started doing this, my wife would prepare the posole’ from a recipe she’d learned from her mom. As her mind has deteriorated, I’ve picked up more and more of the process until, now, I’m the cook, and my wife the assistant.

Part of the challenge is procuring groceries, a process requiring us to walk downhill to the store and lug the needed items back up the hill. There is always a second trip because I always forget something. I put these efforts down to healthy exercise. The larger difficulty is emotional and mental, staying patient and caring as my wife becomes more and more anxious about the coming event, asking the same questions again and again. Who’s coming? When are they coming? Why are they coming? Who’s coming?…

As much as she enjoys the thought of company, she is also fearful that someone is going to take her things, so she begins to hide and cover them up. Still, we got through this and by mid afternoon the posole’ is simmering on the stove, our home filled with the sumptuous aroma of good things cooking. My wife is excited but needs hugs and assurance that all is well. 

Guests eventually arrive amidst smiles and laughter and all gather around to share a delicious meal and the opportunity to connect with each other again. My wife is happy, basking in all the love of the moment. Yet, I notice that she is not able to enter into conversation, most topics are too confusing for her. She retreats to the kitchen to do dishes, babbling joyfully to herself.

The evening winds down, friends depart, my wife and I hug, feeling good for the party’s success, but too tired to clean up after it. 

As I sat sipping tea the following morning while my wife engaged in her favorite pastime, adult coloring books, I reflected. yes, the previous night’s event had gone wonderfully well and it had been a great gathering. My wife had enjoyed it. Yet, I was beat. Certainly, the effort had been worth it, but would I ever want to do it again? perhaps it’s time to quit on a high note.

Time will tell.

tio stib

You might also enjoy: My Dementia Diary 17 – Hiding the Cookies, My Dementia Diary

 

Lumpy Gravy, thoughts on writing Well

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I’m working on the rewrite of a chapter in a new book and in spite of hours of effort, when I pause to listen to what I’ve written, it sounds like lumpy gravy.

Yes, I realize that gravy doesn’t talk, sing, or make any other noise, but it still seems the perfect metaphor for my imperfect words. In case you’re not familiar with gravy and, in particular, lumpy gravy, a brief description-

Gravy is a sauce made from cooked meat juices, stock, and other ingredients. One ingredient is flour, which is used to thicken the sauce. When the flour is added incorrectly, the result is lumpy gravy, little balls of unmixed flour in the sauce, a culinary no-no. Like good writing, I believe creating good gravy, a sumptuously smooth sauce, is a combination of rigorous practicality and delicate art.

My own experience is that lumpy gravy usually results from hurrying, compromising time and care because of impatience, setting an unrealistic timeline for creating something that simply cannot be rushed. There is a proper order and way to add and mix ingredients. don’t do this and you get lumps.

what are the lumps in my writing? Words and phrases that don’t sound right, feel out of place, don’t fit the desired style, don’t truly support the theme. Adverbs and adjectives that were easy to insert but, upon reflection, don’t add anything. 

What I write seldom comes out smooth and lump free the first time. Admittedly, I rarely succeed at creating lump free gravy either. In cooking, there are two ways to fix this, stir or whisk much more, or, something few will admit to, strain the gravy through a sieve to remove the lumps. 

This is what rewriting is all about, the writer’s process of removing the lumps from his work through careful consideration, in my case, listening as I can’t see what I’ve written. Often I brainstorm words, sentences, even paragraphs. with the magic power of today’s word processing technology and my text reader friend, Alex voiceOver, I can quickly try and listen to many options, until I hear something that is smooth and feels right. And on I move to the next paragraph.

Ultimately, I’m the cook in my word kitchen and I know, that unless what I’ve written passes my taste test, unless I’ve taken the time, done the work, to make perfect, lump free, gravy, those words can’t leave the kitchen.

tio stib

You might also enjoy: Writing Well

Paddling a Submarine vs. Living an Authentic Life 

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Last night I dreamed I was paddling a canoe up a lake in the middle of the night. It was calm, I felt peaceful, yet there was one concern. The canoe was underwater. I was trying to paddle a submarine.

I’ve spent years listening to my dreams, paying attention to patterns, weighing the emotions of dreams with respect to my life at the moment. I believe larger forces speak to me in that unconscious world, forces that can guide me to awareness of deeper truths. This pushes me to wonder, why was I paddling a submarine?

I know there are many ways to interpret dreams, but ultimately, I tend to accept that my dreams are about me. Over the years, I’ve noticed that when I’m honest about how I feel in my dreams, they have given me clues to parts of me I needed to pay attention to.

Paddling a submarine. I feel this dream was about my need to live an authentic life. Paddling the canoe was me moving forward in life. My goal was to get to the end of the lake, to a state of inner peace, but I was struggling because I was keeping my emotions below the surface. If I would allow my feelings to express themselves above the water, I would have less resistance to life and my journey would be immensely easier.

I need to be genuine, original, true and trustworthy, and not be in fear of what the world may think of me in my many moments of  smallness.

Authenticity means to be honest, to be vulnerable, to take risks. Authenticity is built one day, one choice, at a time. It is a process of continually stepping out of my comfort zone and engaging the world from a place of worthiness vs. shame.

Authenticity is a daily journey into the wilderness of being fully alive.

What’s the greater risk I ask myself? Living life based on what other people think, or being vibrantly alive based on how I feel, what I believe, and who I am?

This blog, “Travels with Tio, a blind writer’s path to happiness,” is my journey, my choice, to be all of me, fully alive. It is one way I will raise myself from paddling a submarine, to paddling a canoe, to perhaps even flying.

What does authenticity mean to you? How does it affect your life?

Please share your feelings on being the authentic “you”.

tio Stib

2013, 2017, 2018

Brene’ Brown recently gave a TED talk, “Listening to Shame,” in which she explores the challenges of authenticity. Brown believes authenticity is a process, a series of choices we make in our lives, choices made each day, in each moment, to be real…or not.

Here’s the link: http://www.cnn.com/2012/04/15/opinion/brown-authentic-self/index.html?hpt=op_bn2

 

My Dementia Diary 8 – Sometimes She Knows

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She cried last night. She was afraid. Something was unsettled in her mind, but she could not explain it. I hugged her close and kept whispering that I loved her. Slowly, my wife began to relax and eventually fell asleep.

I lay awake and thought about what had just happened. My wife and I have never talked about her dementia, her failing mind. Months ago, when I realized what was happening, I’d wanted to have that conversation, but, by then, it was too late. Her brain could not grasp dementia rationally. Instead, she became angry, upset because she thought I was criticizing her. I’ve not mentioned the subject since. Yet part of her knows that something is wrong.

Sometimes, in the middle of another conversation, she will stop and ask me, “what’s happening? What’s the matter?”

And I hug her even tighter.

tio stib

You might also enjoy: My Dementia Diary 7 – The Marvelous Mind