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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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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My Dementia Diary 13 – This Child Who Once Was Woman

she laughs at dancing butterflies
smiles at babies passing by
clings to me when brought to cry
this child who once was woman

her zest is sparkling innocence
a love of life without a fence
a mind released from circumstance
this child who once was woman

a singing bird
a playful word
the mirth of anything absurd
she hugs
she screams
she loves 
she beams
this child who once was woman

my heart beats glad, she is such joy
reminds me when I was a boy
of times preceding plots and ploys
this child who once was woman

the change, I was slow to see
as fog crept over memories
and here is all that she can be
this child who once was woman

now, I hold her close and dear
do my best to soften fears
not to shed a single tear
make the most while she is here
my wife who once was woman

tio stib

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My Dementia Diary 12 – My Grandfather’s Clock

There is a clock sitting on the shelf near our bed. It belonged to my mom’s dad and was passed on to me, making it my grandfather’s clock. Over a hundred years old, this timepiece is relatively small, meant to be set on a fireplace mantle, but it has a surprisingly vibrant chime. There are no batteries within, its mechanism driven by a coiled brass spring, which I wind weekly with a dozen turns of a key. For this effort, I am rewarded with a melodious chime counting out each and every hour.

I take comfort from these chimes, from the tick-tock of the ever swinging pendulum, an aroused awareness that time is now. I wonder if my grandfather, my mother, other family members, felt a similar connection.

I’ve lived more than 600,000 hours so far, a surprising number when I attempt to remember the breadth of my life experience. what happened to all those hours? The more important question, what will I do with the hours I have left?

Each tick of that clock is a moment I will never have again.

How many more chimes are left in my life?

How blessed I am to have had so many hours of being.

As my wife sleeps peacefully beside me, I again find comfort in the tick-tock of time, past, present, and future, and I drift away in hopes of hearing the morning chimes once more.

There’s an old folk song that beautifully expresses my sentiments, perfectly named, “My Grandfather’s Clock.” Here’s a link to a Johnny cash rendition

tio stib

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My Dementia Diary 11 – Morning Bliss

After several weeks of blustery cool and wet weather, today dawned warm with azure skies. We started out on our daily walk with one less layer of clothes. I’d even gone so far as abandoning my jeans for shorts. The Spring air, the melodies of newly arrived songbirds, my wife’s constant flow of delighted descriptions of happenings around us, was blissful.

I was suddenly struck with how fortunate we are to have the life we live, a peaceful and safe town closely connected to Nature, nearby friends and convenient walking access to all our daily needs, a comfortable and affordable home.

Given the challenges dementia and blindness present us, it’s hard to imagine how we could have a better living situation.

On top of these blessings, is the gift of still being able to share the simple joys of living in such a perfect place with my wife. True, we no longer have any sort of deep intellectual conversations, yet we can enjoy the little things. Ice cream cones and hot dogs. Tea and cookies. Hummingbirds at the feeder. the honks of Canada geese flying overhead. The smell of the beach at low tide. The laughs of children at the playground. “Hllos” and “How are yous” with neighbors and passersby.

My wife has become my eyes. through her childlike curiosity and delight, I am able to enjoy the world around us.

For this, I am deeply grateful.

tio stib

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