My Dementia Diary 75 – Sleepless in Benicia

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.. 

“D Watch on deck!”

tio stib

You might also enjoy: Life Journey Poems & Prose, My Dementia Diary

 

My Dementia Diary 74 – We Never Had “The Talk”

Looking back on our life with dementia, I realize my wife and I never had “the Talk.” We never sat down, cried, agonized, shared our fears and feelings about the difficult road in front of us.

Listening to recountings of other couples on similar journeys, I’ve often heard about how they worked together to plan and prepare for the disease that was going to suck the life out of one of them. 

We never had these conversations, never made plans together, it just didn’t happen.

Partly, that’s because one of my wife’s many endearing qualities is that she lives in the moment, and after the moment, the day, and after that, maybe the week. I’ve never known her to think much beyond that. I’m the strategic thinker in the partnership while she keeps me grounded in “be here now.”

Also, I believe that her dementia actually began affecting her quite some time before it became obvious to others. There were occasional episodes of memory lapse and emotional strangeness that were discounted at the time, but perhaps were early indicators of a lurking problem.

When we finally found ourselves listening to the neurologist telling us my wife showed symptoms of dementia, I don’t think she could grasp what the doctor was saying. Hell, she felt fine, life was good, so what if she forgot a few things.

That was six years ago. My wife and I never had “the Talk,” and what good would it do now? Yes, I do have an ongoing dialogue with the rest of the family about how to best care for the woman we all love, helping her to have. each day, a healthy and happy life.

She does ask me sometimes, when she thinks  people are talking about her, “am I crazy?”

“Absolutely not!”

tio stib

You might also enjoy: This Child Who Once Was Woman, My Dementia Diary

 

My Dementia Diary 73 – Sex, Fishing, and Other Goodbyes

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.”

tio stib

You might also enjoy: This Child Who Once Was Woman, My Dementia Diary

 

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

You might also enjoy: My Dementia Diary 25 – Life in Reverse, My Dementia Diary

My Dementia Diary 72 – Slip Sliding Away

Lately, I’ve felt my life has, in the words of Paul Simon, been “slip sliding away..”

slip sliding away
slip sliding away
you know the nearer your destination
the more you’re slip sliding away

-lyrics from song by Paul Simon

There’s an inevitability about my wife’s deteriorating dementia, only one way this story will end. Sure, we all will die, but the process with her is agonizingly slow.

Yes, I do my best to make the most of the moments when she is happy, when life is simple, when it’s possible to forget what’s really going on. But, then she puts her pants on backwards, asks me where the bathroom is, or asks me if I’m married.

There’s a balance I struggle to find each day, somewhere between grief and joy, the reality that there’s a caregiving job to do and gratefulness for all the blessings of our shared life together.

Some things are “slip, sliding away,” but we can still have a perfect day.

tio stib

You might also enjoy: Almost Heaven, My Dementia Diary

My Dementia Diary 71 – What We Might Have Been

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

life lived
though briefly

together

tio stib

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My Dementia Diary 70 – Death by a a Thousand Little Losses

It’s the little things that jar me , that pop the  denial 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.

tio stib

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