Tag Archives: caregiving

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My Dementia Diary 75 – Sleepless in Benicia

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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

 

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

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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

 

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

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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

 

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My Dementia Diary 72 – Slip Sliding Away

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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

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

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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

You might also enjoy: Life is Like a Broken Egg, My Dementia Diary

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My Dementia Diary 68 – Imaginary People

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My wife is spending more and more time in conversations with imaginary people. We’ll be eating at the dining table and she’ll suddenly start talking to her son. As he’s in Spain, I doubt he can hear her. She’ll walk outside and begin babbling with an unseen audience in the garden. Perhaps I’m being presumptive, perhaps she does see the people who are not there. She’ll be sitting at her desk working on a coloring project and I’ll hear her sharing drawings with her mother, who is watching television in Mexico.

At first, these conversations bothered me, feeling like another downward step with her deteriorating dementia. Then, I considered the positive side of such conversations-

First, one can have these conversations whenever one pleases, no waiting for family to call or a neighbor to knock on the door.

Next, by initiating such interactions, one gets to choose the subject of the conversation. And no need to wait until someone finishes their boring monologue before you jump in.

Also, these imaginary people, whether they be a parent, a friend, or a world famous celebrity , are going to listen to you, no matter what.

Equally important, if you don’t like the feedback you’re getting from these folks, you can simply abandon them without feeling rude or guilty. Heck, it’s your imagination.

I think my wife has adopted a perfectly reasonable strategy for dealing with a reality that does not fulfill her needs. She simply creates one that does.

If you don’t like your reality, make a new one. Seems like some wise person has already pointed this out, but please let this be my “ah ha” moment as I’m in need of some self gratification.

Do you think this blog and pretending that imaginary people all over the world care enough about me to listen to my thoughts is a similar alternate reality exercise?

Hey, it’s my delusion and I’m hanging on to it.

tio stib

You might also enjoy: Control Freaking, My Dementia Diary

 

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My Dementia Diary 67 – Feeling Normal

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We have two dear friends, neighbors down the street, who are quite resourceful at finding fun things to do on the cheap. This past week, they asked if we’d like to go to a free noontime concert.

“You bet!”

Friday noon found us in the center of a sunny downtown rooftop garden. comfortably shaded by trees, we sat on the lawn directly in front of the stage. While his wife took mine over to greet a mama duck and her ducklings in a nearby pond, my friend described the setting. 

It was magical, a garden paradise filled with trees and flowers surrounded by towering office buildings and All around us, the buzz of voices as the lawn filled up with other concertgoers.

The wives returned, the tuna sandwiches were passed out, and we munched happily to the delightful sounds of latin jazz. 

For a moment, there was no blindness, no dementia, just us in the midst of happy people enjoying summer music on a glorious day.

Sometimes, it’s just nice to feel normal.

tio stib

You might also enjoy: Flavors of Friends, My Dementia Diary

 

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My Dementia Diary 66 – Retreating

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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.

tio stib

You might also enjoy: Which Mountain to Climb?, My Dementia Diary

 

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My Dementia Diary 65 – A Caregiver’s Vacation

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There were times when I missed her terribly, then exhaustion surrounded me and I slept. I slept without having to get up during the night to help her find the bathroom. I slept without thinking about how we were going to get through the next day. I slept knowing that someone else was caring for my wife and I could finally rest.

And so passed a week away with a friend, a week when our kids traveled from other countries to care for their mother and her dementia and give me a much needed break.

I didn’t realize how worn out I was until I awoke after one day away, shuffled to the dining table, and heard my friend say, “man, you look really tired.”

I was.

It had crept up on me like an unseen fog, surrounded me during the previous weeks and months. I knew it was there but I couldn’t call it out. I was my wife’s caregiver, she needed me, and our kids, lived in other worlds far away. But one day, when I blew up over some triviality, I knew I’d hit the “help needed” mark. I asked, the kids came, and I made my getaway.

I’m just one of over 15 million Americans who are caring for the estimated 5 million persons suffering from Alzheimer’s or some other form of dementia, all of us dealing with the emotional, mental, physical and financial stress of caring for someone whose mind is deteriorating in front of us.

We all need help. We all need a caregiver’s vacation.

I certainly did.

tio stib

You might also enjoy: A Morning Kiss, My Dementia Diary

 

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My Dementia Diary 63 – Awkwardness

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On our daily walks, she greets everyone with a smile and “good morning!” She is even more exuberant with children and babies in strollers, stooping to wave at them and babble excitedly in a combination of Spanish, English, and otherwise unintelligible, but happy,  sounds. 

The response is mixed. Most return the exuberant greetings, but some respond with silence. I can hear their minds whirring.

“Who is this crazy woman?”

I’m sure the awkwardness is not helped by my presence nearby, a blind guy poking about with a white cane.

Although most kids are understandably shy when confronted by strangers, my wife’s wholehearted delight in meting them usually melts their fears away and she often ends up slapping hands with  high fives before we go our separate ways.

And I’m reminded to let go any fears of embarrassment and simply enjoy life in the company of an angel.

tio stib

You might also enjoy: My Dementia Diary 53 – The Walk to Paradise Garden, My Dementia Diary