My Dementia Diary 30 – Fragility

We are both fragile. My wife’s dementia makes her insecure and needy, easily upset by an angry word or errant action. My blindness has left me unable to do much of what I used to do, often leaving me frustrated with my limitations.

Our fragilities don’t mix well.

As my wife is no longer able to adapt rationally to most of what happens around her, including my behavior, it’s up to me to be the adult in the room, to control my responses, to avoid hitting her hot buttons. 

Painful experience has taught me what those buttons are. I’ve learned to respond immediately to her requests for attention, no matter how engrossed I might be in some project. It takes very little to cause a mental and emotional meltdown which results in a lengthy period  of comforting to restore harmony.

I still screw up, but I’ve learned how to avoid this anguish.

I’ve learned to be cheerful even when I’m not feeling it. I’ve learned to stuff anger and negative feelings that would set her off. And, I’ve learned such discipline is a good thing.

Stopping to make lunch instead of vanishing into an hours long obsessive compulsive writing frenzy is a good thing. Taking a break in the middle of the afternoon to walk with her and get an ice cream cone is a good thing. Pausing to enjoy my wife’s excited descriptions of hummingbirds flitting by the feeder is a good thing.

Being mindful of our fragility and letting my wife teach me how to live fully is a good thing.

tio stib

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My Dementia Diary 29 – My Kato

In the hilarious “Pink Panther” film series, the bumbling Inspector Clouseau has a valet named Kato. Beyond his man servant duties, Kato is tasked with keeping Clouseau on his toes, making sure the policeman’s mind is always keen, ready for anything.

Kato does this by surprising Clouseau at unforeseen moments. He jumps out from behind a curtain, drops from a chandelier, or appears inside a closet door. A fight ensues, and the two combatants proceed to destroy everything in sight as they battle each other.

I have my own Kato. Her name is Maria.

Fortunately, she is far less destructive than her movie namesake. However, She is equally silent, ever present, and constantly surprising me. Although my hearing is quite good, she has the uncanny knack of sneaking up unheard.

Bending down to tie my shoes, I’ll suddenly hear a voice in front of me, “do you need help?”

I’ll be immersed in a stream of warm water and the shower door will open, “are you okay?”

Then, there’s my breakfast routine. Being blind and needing to be organized, I’ll first set everything  I’ll need on the counter, bowls, spoons, measuring cup, fruit, hot cereal. Then, I’ll put a pot of water on the stove to boil. When it starts steaming, I’ll turn around for the hot cereal and…

The counter has been cleaned. Everything has been put away, often in unexpected places. My Kato has been busy.

“Do you love me?”

“Always.”

tio stib

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My Dementia Diary 28 – Resets

We have a routine. Except for the rare appointment or when things go sideways, we do the same things everyday. This stability of sameness comforts my wife. It is easy to fulfill her simple expectations. We get up, we walk, we visit the grocery store, perhaps the library.  Then, return home and eat breakfast. In the afternoon, she colors and I write. Often, our kids will call via video conferencing from one of the three different continents they live on. Then, time for late lunch, which serves as our dinner. Another walk, maybe an ice cream cone stop. By then, the sun is dropping and we head for bed.

However, with increasing frequency, our days don’t go that way. Something happens which sets off my wife’s fragile mind and she has a meltdown. She’ll get anxious, thinking something is wrong with someone in the family. We need to call, but no one answers. Or, I’ll get upset with something I can’t do and mutter some angry words. Her response will be, “why are you angry with me?” I’m not, but that’s whaat her mind grabs onto. The past week, she’s been arguing with the images in the mirror, no longer able to realize they are reflections.

There’s a long list of little things that can upset our daily pattern. When this happens, I’ve learned to drop whatever I’m doing and make a radical change.

It’s time to reset, do something different that takes her mind in a different direction.

Go for another walk, visit the taco truck for a burrito or the coffee shop for hot chocolate, anything that provides a radical change in environment which gives her mind something else to focus on.

Fortunately, she never resists. As long as we’re doing something together, she’s happy. Moments after we’ve left home for a new experience, she’s a different person, whatever was bothering her has been forgotten.

Lying in bed at night, I play back the day’s memories. If I recall smiles and happiness, we’ve done well. 

And I go to sleep knowing tomorrow will be a new adventure.

tio stib

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My Dementia Diary 27 – What’s Your Name?

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

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My Dementia Diary 26 – Over the Rainbow

Some years ago, I was listening to the radio and the announcer said he’d just heard the most amazing voice and he had to share it. The voice was that of Israel Kamakawiwo’ole, an Hawaiian giant known as “Iz” to his many fans. I listened to his rendition of “Somewhere Over the Rainbow” and “It’s a Beautiful World” and cried. I felt like I was hearing Heaven singing to me. 

I often turn to music for solace and inspiration and count among my many blessings my collection of musical artist friends.

Here’s Iz singing as he plays the ukulele, which nearly disappears in his huge hands.

Yes, I do believe each of us has a special gift to share with the world.

tio stib

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My Dementia Diary 25 – Life in Reverse

Noting my wife’s continuing mental deterioration from rational adult to simple minded child, I was reminded of a piece I saw George Carlin do some years ago. Bless his brilliant and irreverent mind, George has moved on to the great comedy stage in the sky, but he leaves many laughs behind him. I think his piece on “Life in Reverse” is all-time hilarious. Wouldn’t it be great if life actually worked this way-

tio stib

Life in Reverse By George Carlin

In my next life I want to live my life backwards.
You start out dead and get that out of the way.
Then you wake up in an old people’s home
feeling better every day.
You get kicked out for being too healthy,
go collect your pension,
and then when you start work,
you get a gold watch and a party on your first day.
You work 40 years
until you’re young enough to enjoy your retirement.
You party, drink alcohol, and are generally promiscuous,
then you are ready for high school.
You then go to primary school,
you become a kid,
you play.
You have no responsibilities,
you become a baby until you are born.
And then you spend your last 9 months
floating in luxurious spa-like conditions
with central heating and room service on tap,
larger quarters every day and then Voila!
You finish off as an orgasm.

I rest my case.

by George Carlin, 1937-2008

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My Dementia Diary 24 – A Season of Endings

“Too warm!” she told me, standing in the shower.

I realized she was no longer able to adjust the water temperature on her own, the control knob confused her. I turned the knob.

“Better,” she said.

It was another sign, another slip, another reminder of our downward journey together in a season of endings.

We’ve reached a point where what used to be easy, things that were once simple to do, are no longer so. Such changes are not obvious to her, but are painfully so for me. We are slowly sliding down to a place from which there is no return. Knowing this, I’m making every effort to enjoy the precious things we can still do together.

Recently, we took a train trip north to a small town in Oregon for a family reunion. We’ve done this before, and, as train travel is more flexible than buses and planes, it had been enjoyable. However, this time, she was more fearful, uneasy, not able to relax in a setting so different than our home world. This unease continued when we met up with family at a beautiful lakeside lodge. Ultimately, we had a good time, but I was aware of how much my wife’s ability to adapt to different environments had diminished in the past year. I was also aware of how difficult it seemed to be for other family members to interact with us. It occurred to me that it was quite likely the last family reunion we’d attend.

Philosophically, lives end, we all will pass on. Emotionally, this fact is difficult to accept. I suspect that most of the family awkwardness with interacting with us was their own fears about mortality. I wish there could have been more open conversation about this subject, but it didn’t happen. 

Youth does not want to think about the season of endings, but this is a luxury I cannot afford, so I focus on gratitude for the wonderful life we’ve been blessed with, taking each ending in its turn as an opportunity to be thankful for what we’ve had and what we still have.

“I’m taking a shower with shampoo!” she tells me with delight.

Yes, we are blessed.

tio stib

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