the first time we walked together
we got lost
the perfect path
to knowing each other
she never complained
simply smiled
marveled at flowers and bird
held my hand
trusted
we’ve walked on
through mountain meadows
singing with bees and butterflies
dancing barefoot on foggy beaches
gleefully splashing in the waves
hiding under an umbrella in Spring rain
sampling strawberries at the Farmers’ Market
gossiping with passing neighbors
skipping to the grocery store
plopping onto our favorite bench
Today is our wedding anniversary. Although my wife’s mind no longer recalls that special day, I remember the vows we made to each other-
to have and to hold
from this day forward
for better for worse
for richer for poorer
in sickness and in health
until death do us part
I don’t think anyone can really anticipate “for better for worse, in sickness and in health.” You just do your best and gut it out when the stuff hits the fan. That said, I don’t think you can really appreciate the intimate immensity of committed love until you have suffered through such trials with a partner.
What I most remember about our wedding day was thinking that my wife was the most beautiful woman in the world and that I’d never seen her so happy.
I’m now blind and she has dementia, but my wife is still the most beautiful, radiantly joyful woman I’ve known. She has pushed me to be a better man and given me more blessings than I’d ever imagined.
lost in the bliss of slumber
I’m prodded awake
hear her pleading
help me
she stands beside the bed
naked
shivering
help me
it’s 4 a.m.
she has shed her pajamas
and there are no words
no rational arguments
nothing will quell her demented need
to get dressed and go for a walk
I will myself up
take her arm gently
lead her to the closet,, a chair
and begin, as we’ve done so many times
to dress her
underwear, socks, shirt
guide her legs into pants
her arms into a jacket
I place shoes by her feet
and leave to use the bathroom
relieving myself,
the same question haunts me
how did I offend the gods
what did I do
to create this nightmare
I hear a whimper
she’s standing in the doorway
clothes discarded
naked in the night
We keep downshifting through activities as my wife’s mental ability to entertain herself continues to diminish. Once, she enjoyed painting vivid abstracts and would do this for days. When that became too complicated she moved to coloring books. As her coloring projects no longer lasts more than a few minutes, it was time for something new.
Enter “FaceTime Karaoke.”
No, this is not a term you will find on Wikipedia because I made it up. It involves a video call with one of our kids with the addition of another device playing Mexican pop tunes. My wife immediately bursts out singing, and this impromptu concert goes on and on. It’s amazing how she seems to remember every song.
Music therapy is nothing new for dementia patients, rather, it’s recommended. For some reason, yet to be explained, Alzheimer’s destroys many parts of the brain but skips the part that stores and remembers music. Some reason this is because music is a complex array of sounds and emotions stored in a unique place. All I know is that my wife can’t think rationally or remember what she had for breakfast but when she hears those songs she learned fifty years ago, music erupts joyfully from her mouth.
Score one for technology, which allows us to connect intimately with family in far away places, sharing the fun and memories of songs they grew up with.
Yes, I’m careful to add nothing more than a little background percussion as it has been noted that my voice would embarrass a drunken frog.
We’ve entered a new phase in our caregiving adventure, the part where my healthy, energetic demented wife, who buzzes around tirelessly during the day, now sleeps a few hours in the evening, then buzzes around, and up and down, all night too.
The problem is that she used to sleep soundly all night, and this quiet time was when I rested after hours of caregiving. Now, when I’ve finally drifted off to dreamland, I’m suddenly prodded awake and hear a voice in my ear demanding repeatedly,
“Help me!”
And she really does need help. She’s cold, or afraid, or can’t remember where the bathroom is, and once there, what to do next. So I get up, but not with a smile and cheerful “sure thing.” More like the growl of an angry bear awakened prematurely from hibernation.
Unfortunately, my 2 a.m. growling sends my wife into an emotional tailspin requiring at least an hour of patient calm talk and hugs to successfully guide her through the required bathroom procedure and back to bed again. realizing that this process isn’t working for either of us, I’ve decided to adopt a strategy used in my wilder years when crewing on long distance sailboat races.
These journeys lasted for days and so the crew broke up responsibilities into shifts, called watches, when members were either on or off duty. For example, “A” Watch might be on duty from midnight until four a.m., then “B” Watch came on from four until eight A.m.. Yes, it was tough to force myself awake and out of my warm sleeping bag cocoon when I heard the call, “B Watch on deck!” but I was part of a team and I had a responsibility to fulfill. Complaining wasn’t going to change that.
I’m on another long distance race, caregiving for a wife with dementia. There are two shifts, “D” Watch for day, and “D” Watch for dark. Yes, I know the two shifts have the same name, but as this boat only has a caregiving crew of one, I’ve decided not to confuse myself. When I lie down to sleep at night, I repeat “D Watch on deck!” as a reminder not to growl at my wife when she will certainly wake me later.
As our circumstances change, I continue to adapt, as does my wife. Apparently, she decided that prodding awake a hibernating bear was producing undesirable results, and so has adopted a new strategy. She carefully fulls the covers off the bed, leaving me naked and exposed to the cool night air. When I reach reflexively to pull the covers up and don’t find them, I rise up to search. This is when I hear the voice nearby,
”Help me!”
Damn clever, hard to get mad at such cunning, even at 2 a.m..
Don’t it always seem to go
that you don’t know what you’ve got ’til it’s gone
Joni Mitchell, “Big Yellow Taxi”
As I listened to Joni sing about paving paradise, I realized I’ve recently lost two big things in my life.
Sex and fishing.
Fishing used to be my soul food, what I craved when life went sideways, dreams were slipping away, or I just needed a break from the human race. My typical fishing trip was an impetuous decision to get out of town, followed by tossing rod, clothes, and snacks into the car and heading out. I had some trusted spots and a mental list of obscure places on the map that had possibilities. I was often several miles down the road before a clear direction became obvious. Location really didn’t matter much, I just wanted to be standing alone in a stream, feeling the sun’s warmth on my face, filling my nostrils with the invigorating air of wildness, casting a fly towards some trophy fish fantasy.
One of the many blessings of our marriage is that my wife found fishing intoxicating too. I remember her excited squeals when she caught her first trout and her delighted giggles as she released it and watched it dart away. I remember looking past her at the backdrop of golden aspen leaves dancing in an azure sky, on a glorious fall day. I remember thinking this is as good as it gets.
Blindness ended such impetuous outings. In time, I found a guide who took the pair of us down a favorite river in his drift boat. It felt great to be on the water again, but I can’t pretend it was anything like before. Still, we enjoyed floating through a quiet world on a beautiful day, trying to wake fish who didn’t want to play. The tranquility was shattered when dementia struck and my wife’s mind melted down. She had to get out of the boat. Words could not calm her and the guide rowed us to shore.
We haven’t been fishing since.
Then there’s sex. We’ve been wonderful, passionate lovers, always open, always eager to please each other. With us, it just happens, a kiss, a touch, a fond embrace and love unfolds. But, recently, I noticed that, in spite of these triggers, nothing else was happening. The woman who once loved to play sexually was now a child who just wanted to be cared for. Dementia had stolen another part of the woman I love and the life we shared together.
My blindness has put such losses in perspective. I’d never expected to lose my sight and the experience was devastating. But I survived and, with the help of friends, learned to explore and appreciate all those things in life that can’t be seen. I also learned that things we treasure can disappear in an instant.
Do I miss sex? Heck yes, and I also miss my wife’s killer guacamole. But these things are not coming back so I need to be grateful for what we do have. She still loves to kiss and hug and she’s very good at it. She still makes my day on our walks when she rushes up to coo and smile at every baby we meet. She still holds my hand as we sit on our favorite bench on the beach and share the feelings of living in a beautiful world.
And fishing? Another tough goodbye, but the fly fishing rod that sat on a shelf by the door for three years waiting in vain to be taken away on another impetuous adventure is now in the hands of my new son-in-law who has a a matching passion. I expect some marvelous stories will be coming my way soon.
In case you’re a Joni Mitchell fan, here’s a link to “Big Yellow Taxi.”
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.
in the blackness of eternal night
I wonder what we might have been
had fate not gulped us whole
what roads would have called us on
what waves swept us to other lands
what mountains echoed with our joy
what babies cooed, what friends cajoled
what rainbows chased
what dreams
had fate not gulped us whole
and yet, in soul’s silence
as I hold her hand so soft and still
I know peace
It’s the little things that jar me , that pop thedenial bubble hiding my wife’s deteriorating dementia.
This morning, it was toothpaste.
When I handed her the tube, she didn’t know what to do with it.
“No problem,” I said, and squeezed paste on the brush for her.
Such a simple task, yesterday she’d done this herself. Today, her mind could not sort it out.
The agony is that there are moments, hours, sometimes days, when nothing seems to change, when part of me believes we have somehow escaped dementia’s death by a thousand little losses.
But that bubble will pop again tomorrow when I hand her the tube of toothpaste.
For now, I’ll keep pretending, it’s how I stay sane.
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.
Travels with Tio 