Tag Archive | dementia

Kaleidoscope

This week I wrote report cards for my fourth grade class. I wandered through the piles of scored papers — the mounds of mental notes — and I put a grade on a child’s blossoming life. Sigh. It’s not easy, grading. It can sometimes feel too clinical, impersonal, even harsh. And then come the comments — the real grade. The words that need to give life, hope and encouragement but often have to entwine some truthful ‘ow-ies.’ Sigh.

And this year the principal is reading every. single. report card. So, now, in essence,  I’m the one being graded. Sigh.

…I’ve been sighing a lot this week.

So, today I woke up exhausted, still tumbling in the kaleidoscope of last week, mixed together with all the pieces of my life that often collide — things unfinished, not started, some forgotten. Some needing loving attention. Some I thought I discarded, yet are still maddeningly there, tumbling with all the rest.

And then I thought about this blog.

Already there are beginnings of blogs I have stashed away that someday will be dragged out, worked on, published. Already I feel a sense of commitment in this area even though I intellectually know that its just a small thing in the big scheme of things. Already there are apologies I want to make, and computer things I want to tweak, and an internal ‘deadline’ I want to keep. (Can you sense another sigh coming?)

But today, I’ve just decided,  I’m laying the sighing aside. I’m going on a rare date with my hubby. I’m leaving our “Alzy Land” in the hands of a sweet friend who has a heart for Dad, and Chris and I are going to laugh, and eat, and buy a Christmas tree — and enjoy, this day — this precious gift of time — this moment.

Today, I’m going to leave my life ungraded. Or better yet, I’m going to leave the grading to a God who took the test for me and thankfully passed with flying (resurrection) colors. (I’m not going to even revise or edit this blog post.) Sigh.

Now THAT is a good sigh.

Instructions Not Included

 

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I don’t know what I expected when you first arrived. A catatonic version of your old self? A distant stranger?

Would that sweet twinkle now be missing from your eyes?

After one long month of uncertainties, you and Chris were finally coming home. Chris: wearied, burdened, but calmly resolute. You: lost, confused, with the dreaded “A” word newly branded across your brain. Everything within me screamed from the depth of my gut: “Warning! Danger! Alzheimer’s Patient: Proceed at your own risk.”

… all I knew was fear.

Chris’ voice had sounded tired. Stressed. “We’re just arrived. We’ll be at the curb.” I had driven one hundred miles to take you home. Your new home. Your into-forever home. A new beginning for us all.

Would you even know what was happening? Would you even know who I was?

I could see you in the distance, as I waited in traffic to pull up to the curb. You steadied yourself against the post, staring at the ground just beyond your feet. Chris hovered nearby, furrowed brow; I could see his already weighted shoulders.

Oh sweet Jesus, can we do this?

Slowly traffic inched ahead.

Can we be who he needs us to be?
Stop. Go. Clutch out, clutch in. Wait. Breathe.

Is there a way not to lose ourselves when witnessing so much loss?
Closer now, inch by inch. The traffic so mercifully slow.

How can we still live, Lord, while his mind slowly dies?
How can we still love, Lord, while we watch all loveliness Fly. Away. Gone.
Jesus?… Can we really do this?


And through my own gridlocked brain, I sensed his answer:
Inch by inch, Jane.
Stop. Go. Wait, Jane.
Breathe, Jane.

Such simple words, but I felt their gentle Truth.

Drawing a slow, deep breath, I pulled up to the curb, and caught Chris’ eye.

And Jane?
Yes, Lord?
It’s really not a whole lot different than taking your first child home.

A smile smacked across my face.  I wasn’t expecting that. I chuckled.

I remembered taking Trevor home. I remember Chris and I wondering why he hadn’t come with instructions. And I smiled remembering, now, that first wonderful, daunting, holding-our-breath night

… a first night like this one.
Okay, Jesus, thanks. I needed that … but the first poopy diaper, I’m outta here.

Smile.

We were going to be just fine.

 

(Postscript, eight years later…)

And we were.

And he was.

And even in the grips of a horrific disease there still rained down a sweet, sweet mercy:

He would never know his journey back to infancy.

Back to the One who loved him first.

 

You’re free now, Dad. Fly away home.

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Carroll Lloyd Williams ~  July 20, 1926  – June 28, 2016

 

The View from here

It was the beginning of my summer, June 14th, 2011 — the last day of teaching my 4th grade class, and the first day of the first summer to shed my empty-nested heart and embrace a new season of Life with my husband. I raced home with a school girl anticipation and excitement I hadn’t felt in quite a while. Bursting through the door, hoping to see matched enthusiasm, I was instead greeted by a look on Chris’ face that told me somehow, somewhere tragedy had struck. As it turned out, 1,237 miles away, my father-in-law (84) had been found wandering, lost, in a hospital parking lot — disheveled, disoriented, distraught…alone.

Hospital attendants were called. Dad didn’t know where he was. He didn’t know how he had gotten there. He didn’t know he had just admitted his wife of two years for a severe break to her arm. He didn’t even know she was his wife. It was quickly determined that the dementia he was exhibiting, (exasperated by trauma), would need indefinite 24/7 care. In gathering him back to the hospital (to get his wife’s consent to admit him until such care could be arranged), they discovered that her depth of dementia was worse than his … A new season of our lives had begun with a vengeance.

July 5th, 2011, one month and a lifetime later, my husband brought Dad home to live with us.

July 5th, 2011. We began caring for a man who is, sadly, a lengthening shadow of the man he once was.

On July 5th, 2011. We began redefining Life.

My husband Chris and I have been thrust into a world we knew nothing about: caretaking, Alzheimer’s, aging parents, unfamiliar isolation. We have walked this new life cautiously, carefully, and honestly? by the seat of our pants. I don’t know anything more about this insidious disease, or losing someone in plain view, than any one of you out there. What I do know I’ve googled and witnessed in only this ONE elderly man’s life. Plus, I am ‘just’ the daughter-in-law; I can’t speak from the perspective of watching a lifetime of memories being strangled to just a few by this insipid white plaque. I can only speak as one who has loved this man and known him for 30 years, longer than my own father. I can only share Life from my plain (Jane) view.

So, what do I hope for in this blog?

* I hope, from the perspective of this new, much smaller and different world, I will be able to adequately put into words some of the circus of emotions that so often get tangled in heartache, anger, laughter — and yes, even gratefulness.

* I hope that what I have to share through ‘in-the-moment’ poems, stories, questions, jumbled thoughts and prayers, might resonate somewhere in your lives, and we can share that understanding nod that says “I understand” … at least a little.

* I hope this can be one small corner where anyone who’s shared the heartache and hard work of caring for a loved one (young or old, sick or well) can find a refuge, or perhaps a community willing to help each other live Life. Really (still) live Life — even here in the trenches.