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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My Dementia Diary 23 – Thank You! Very Good Day!

I am not, by any measure, a so called “morning person.” rather, as insomnia keeps me up until the wee hours and deep sleep is hard earned, I am defiantly resistant to being awakened before my anointed hour, which is never earlier than eight a.m.. Fishing trips are an exception, but that’s another story.

My wife’s waking behavior is completely in contrast to my own. Most often, she is up and buzzing around long before I’m even close to consciousness. Being hesitant to open my eyes, her active presence is usually announced by the sound of her voice.

“Thank you! Very good day!”

These words have become her mantra, used anywhere and anytime for anything that strikes her fancy.

A drawing she has just completed coloring, “Thank you! Very good day!”

Cutting rose buds for the dining table, “Thank you! Very good day!”

Hummingbirds gathering at the feeder, “Thank you! Very good day!”

Her morning cup of coffee, “Thank you! Very good day!”

Meeting people on our daily walk, “Thank you! Very good day!”

There is no end to how and where these words are used, which leads me to consider  that if our vocabulary was limited, if we only had a language of five words, my wife’s choices would do quite well.

“Thank you! Very good day!”

tio stib

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My Dementia Diary 16 – Good News, Bad News, Where is My Solitude

For years, I dreamed of a partner with whom I could share all of life, the joys and the hardships, someone who would be willing and able to take off on a moment’s notice to places unknown simply because it seemed to be a great idea at the time.

Finally, I was blessed with just this partner, and, for one year, we had the magic life together that I’d always dreamed of.

That was a year of unsurpassed bliss and those memories still bring me smiles. However, as so often happens, our road together took an unexpected turn. I lost my sight and she began losing her mind.

And, so, we’ve adapted.

We no longer drive miles from home, but limit our roaming to walking local walking wanderings. It has gotten to the point that I no longer feel comfortable leaving her alone, and, as I’m her only caregiver, this means we’re together all the time, always. Fortunately, my wife has a naturally cheerful disposition and she’s easily guided into whatever activity we need to be doing, from daily walks to grocery shopping. The biggest challenge is my personality, the fact that, for most of my life, I’ve enjoyed times of solitude.

While I’ve treasured sharing adventures with friends, from sailing trips to hikes to new restaurants, when no one was available, I went off on my own. And I loved it!! As has been often shared by others, solitude is not loneliness, it is the beauty and peace of being alone. I have fond recollections of such solitude times, from solo hikes and sailing trips to simply sitting on a beach at sunset. Quiet moments when I could hear stars talking to each other.

Given my wife’s new need for constant companionship, I am finding new ways to give myself the gift of solitude. As she has the envious ability to fall asleep in seconds, I often listen to those imagined stars deep into the night waiting for drowsiness to creep over my mind. Or, I’ll sit outside in the morning sunshine, letting the sweet scent of nearby Jasmine float through me, recalling other dreams of times gone by.

Solitude is soul food, and, as always, it’s up to me to feed myself.

tio stib

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My Dementia Diary 15 – Ice cream

There is one thing my wife’s mind continues to remember with humorous frequency.

Ice cream.

She will forget what I told her five minutes ago, forget birthdays, including her own, but she does not forget ice cream. In the middle of the afternoon, when it’s time for a break, she will approach and coyly ask,

“ice cream?”

Hard to say “no” to such childlike innocence. And, so, we walk down to our favorite ice cream stop at the local pharmacy. She’s all smiles, giggling and excited, even though she’ll ask me several times on the way

“where are we going?”

she doesn’t remember a favorite flavor, but tries to pronounce all the names at the ice cream counter. animal Circus. cookie dough. Pistachio. Butter Pecan, and on, and on. She can’t make up her mind so I’ll pick one for her, knowing all that matters is an ice cream cone in hand.

then we wander out  to sit on a sun drenched bench and savor our treats, one delicious lick at a time. 

And I say a silent prayer of gratitude that she can still come to me and ask,

“ice cream?”

tiostib

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Published on the Saturday Evening Post

Surprise! I’ve received the welcome news that my short story, “Almost heaven,” has been published on the Saturday Evening Post. Wow! Makes an oft rejected writer’s day.

Here’s the link-

“Almost Heaven” in The Saturday Evening Post 

Good writing!

tio stib

 

My dementia Diary 14 – Pink Nails

 

Vietnamese. Spanish. english. Put a blind guy in the middle of this language chaos and what do you get?

Pink nails, or so I’m told.

I am realizing that my wife is less and less able to care for her personal hygiene, from remembering to take showers to brushing her teeth. She has been meticulous about such things in the past, so I’m  always surprised to discover such care is not happening. the remedy is usually a nudging, a gentle reminder, and she will spring into action, smiling. Yes, I am blessed most things are still easy.

But her nails are a different matter.

Up until now, she has done her own finger and toe nail care, cutting, filing, and painting them, an activity she has much enjoyed. However, she recently held out a hand to me and asked me to touch it. Doing so, I felt her nails and realized they were quite long, much longer than she usually kept them. It had probably been weeks since they’d been trimmed. Obviously, she wasn’t doing this herself anymore.

Off we went to the local nail salon. We walk by it often and greet the workers who sit outside lunching, all friendly and all Vietnamese. Upon entering, I explained that my wife needed a manicure and pedicure and pink was the preferred color for her nail polish. There was a response in strange words which I took as affirmative. then, I sat nearby as two young women babbled to my wife in Vietnamese and she babbled back in Spanish. I was quite content to keep my English out of the conversation, trusting my wife’s needs would be met as women seem to be able to understand each other no matter the language differences.

A short time later, she waved her hands gleefully in front of me and I, sensing they must now look beautiful, told her so, feeling good that, once more, we’ve successfully adapted to life’s continuing changes.

Yes, her nails are now likely pink, but I don’t really care, she’s happy. No, I was not tempted to have my own nails done. Blindness gives me a good excuse to avoid that. Besides, I don’t look good in pink, or so I’m told.

tio stib

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Why I Like Being Blind

No, in truth, I seldom like being blind. However, there are moments when I recognize that blindness has some benefits. Here are my top ten reasons to like being blind-

  1. When I get up in the morning, I can’t see how old I’m getting in the mirror.
  2. It’s nice being personally guided through airport security and other checkpoints, avoiding long lines of annoyed travelers.
  3. I don’t have to pretend I’m ignoring people I don’t like. I really can’t see them.
  4. I don’t need to shave every morning, or for that matter, worry about wearing matching socks. Yes, I admit age has something to do with this disregard for fashion.
  5. I can now unabashedly ask for help, paying no attention to my previous suffocating shyness. I need all the help I can get.
  6. I’m no longer asked to help people move. My history of breaking other people’s valuable objects has nothing to do with this.
  7. I now have an excuse for talking to myself. I’m talking to my computer.
  8. I now have a socially acceptable excuse for eating with my fingers. It’s the most effective way to get food into my mouth.
  9. I now have a more acceptable reason than being drunk for tripping over curbs. Yes, likely I’ve been drinking, but now I’m blind drunk. .
  10. 10. When late for appointments, it’s now much easier to say “Sorry, got lost.”

I’m always seeking more reasons to be happy with blindness, please add yours as a “Comment” below.

tio stib

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