Tuesday, March 10, 2015

It's Not For Me to Say

For heaven's sake!
Biking here to work this morning, it finally came clear to me what I wanted to say in that agonized post I wrote a couple nights ago about dementia not being "an exciting journey".

Simply (and I added this to the post):
IT IS NOT FOR ME TO SAY whether or not dementia is an "exciting journey" (or, similarly, whether or not depression is a "spiritual gift"). 

People may who live with it may say if it is or not for them, but I don't live with it;  choose to work with people with dementia, and Activities is on the more "exciting" side.

The way I see it, we may experience or create good or exciting things in the face of suffering and disease, but suffering and disease are not in themselves Good. 

I guess I'll leave up what I originally wrote, with this added, to show the evolution of my thinking, though I would say it differently now.


Clowncar said...

To show it is not all terror: D's last days in the Memory Unit ended with an unexpectedly sweet gift (a lesson within this: savor the gifts when they occur, you will never know when they are going to happen, and they will rarely last for long, dementia is a constantly moving target).

Whenever I’d walk into the Unit, she would usually already be seated in the dining room, waiting for supper, and when the workers saw me they would say to her, “look who’s here?” and she would crane her neck, attempting to see who it was. When I got close enough she’d recognize me, and she’d break into a smile, give me a hug and say, “I’m so glad you’re here,” or “I’m so happy you came.” Every day I showed was a surprise to her, she never expected me. I was always, to her, a happy unexpected visit.

Previously, whenever I’d leave, I would say, “I love you,” and she would repeat it back to me, parroting me. For a period of a few weeks, however, at the end of her stay there at the Memory Unit, she began to say it first. She’d look me in the eye at some point during the visit and very slowly and lucidly say “I love you, Jeff.” It felt very much as if she knew she would not be herself much longer, that I would be fully lost to her, and that whatever of her original self that was left was reaching out to me from deep within her to tell me she knew I was there, knew I was taking care of her, knew I loved her. Acknowledging our lives together, our love for each other, our vows to each other one last time. Perhaps this is a result of my projecting my own wishes and desires onto her behavior, but it is such a marked difference I like to think it is true.

Zhoen said...

It's not for me to say, you love me
It's not for me to say, you'll always care
Oh.. but here for the moment
I can hold you fast
And press your lips to mine
And dream that love will last

As far as I can see, This is heaven
And speaking just for me, It's ours to share
Perhaps the glow of love will grow
With every passing day
Or we may never meet again
But then it's not for me to say

The Crow said...

We all need heroes, people we can look up to, to show us how to be brave, how to face pain and fear, how to show love and compassion - how to be the best we humans can be - how to carry on when everything screams for us to quit.

You model all that I want to be, Jeff, without trying, just by being yourself. hope you and D have many more of those moments before the connections all are broken, for both your sakes. Thank you.

Fresca said...

CLOWNCAR: Thanks for that.

A couple days ago the residents and I took a field trip to spend the gift certificate to Half-Price Books that someone had given the Activities Dept. We chose out a Best of Johnny Carson DVD ("I love Johnny Carson" someone said) and The Wizard of Oz (I can't believe we didn't already own it).

Driving home ("home"), we all sang songs from the WoOz, and when we sang "Somewhere Over the Rainbow" I couldn't finish, I got so choked up.
No one else seemed aware of how poignant it was, but I sure did:

"Birds fly over the rainbow, why oh why can't I?"

Fresca said...

ZHOEN: Yes, I didn't intend it, but when I posted it, that song came to mind.

"We may never meet again" is a good theme for dementia, when we meet over and over again...

CROW: Yes, how to go on when you can't go on...

Someone asked me recently if there's any point in visiting someone who doesn't recognize you, and I said, "ABSOLUTELY!"
They may not recognize you as you, but they will almost certainly "recognize" love and kindness.
Emotions remain strong, though when people get that blank-look face, it's hard to read.
Sometimes we must go on faith.