Alzheimer's, Family

The Valley of the Showdown of Comeuppance

I have undeniably avoided writing this part of the story with seeming inability to put fingers to keyboard. I write amidst not wanting to write… amidst this… soft, small wave… like the calm after, and yet before, a storm that cannot quite subside itself. I had been advised, “It’s okay, don’t write, you’re not ready… so what.” Yeah. The woman leading the grief group was my best friend in those moments. Don’t you love people who tell you what you want to hear and it happens to be appropriate and timely advice? It’s rare. For the record she didn’t tell me not to write for nearly a year. That’s on me.

In my own defense I did begin to write this ten weeks later after my Grief Bestie’s advice… turned 5 months later turned 6…turned 11 months now. Even I can see this is getting out of hand. Writer’s write. It’s time to put on my big girl breeches. Again.

If you have not read the story of Mom and her “journey” (is that what you call it?) with Alzheimer’s you might want to catch up here.

So now we head toward the end. “End” being relative I suppose; for lack of the best word that does, but doesn’t, mean “end”. But for the purpose of simplicity we’ll roll with it.
I had gone home for Thanksgiving. (I just realized as I write this that we are 3 weeks away from the “first” Thanksgiving since Mom passed.) Thanksgiving was scheduled to be the last time I would see Mom in person and somewhat, though losing it quickly, coherent.  When I said goodbye at Thanksgiving and flew home I thought, but couldn’t believe, not really, that it was the last time I’d see her. She wasn’t expected to live past Christmas. 
She was about to prove her predictors wrong.
After Thanksgiving mom doubled down on displaying signs of her exit strategy: sleeping more, expressing anxiety over her surroundings, agitation toward family who visited even to the point of anger and nastiness when they had to leave. All part and parcel, chapter and verse, to the ALZ bible.
(If there are any books that say writing is a joyful experience – they lie. Writing is excruciating. But necessary.)

Mom, to this point had had a couple of ALZ “episodes” – the symptoms of which appear as strokes. But she would bounce back. At first she’d bounce high from not being able to walk or talk to… well, walking and talking again. So she set us up for some high expectations in her ability to recover. Though the nurses did teach us better. (Doesn’t mean we believed them.)

I want to stop here and just say that much of this relaying of the story comes by way of hearsay from my family. Those on the front lines the entire time. Each time I returned and spoke to them more deeply I realized how much more of the story there was and how much I had not known. So for my family I apologize for this one-sidedness that may appear to them reading this.
The patient that was not supposed to live beyond Christmas made it to and beyond. By January 1st she had beat the odds. We had always communicated by a pre-recorded video chat app but now that was not good enough. I wanted some live FaceTime. 

FaceTiming was all indeed about the timing; something that had to be on a good day and the “good” days were disappearing rapidly. FaceTime chats went something like this:

Me:  “Mom, Mom! Mom! It’s Fleur!” 

Mom: Looks at me with drowsy (beautiful deep-set eyes) and then falls helplessly into a slumber on camera.

Me:“Mom…? Moooom…!” 

Mom: Re-emerges momentarily at my loud beckoning and sees me for a brief moment but the call to rest is too powerful and she dozes again.
Even so, we could all see that she always knew who I was. 
The greatest blessing was that right up until almost the end she always knew us. She really did. Not everyone gets that gift. That was a grace.
Then one day,
“Look who’s back!” my brother is wide-eyed on video. “Here she is! Wide awake, smiling and eating WAFFLES!” 
Not what you were expecting was it. We weren’t either.
Yet there she was. Live. Alive a video chompin’ down and swallowing huge mouthfuls of waffle. 
Swallowing was a win because it had been extremely difficult and painful for her in the past months to the point where she’d cringe and motion to her neck when the smallest bite went down. Nothing could be too hot or too cold. Lukewarm vitamin C water was the best she could do. 
Now? Waffles.
Waffles accompanied with a wry look on her face of mild triumph and self-gratification. A regular Saturday mornin’… chompin’ waffles.
I stared at this in amazement. There was a nano-second of…well, I’ll call it heightened curiosity… with a dash of hope. But what trailed behind was a chilling, numbing, dread.
The Rally.

That’s what those in the know call it. The Rally. We were warned long ago of typical signs that the final days are beginning to circle. We were told to watch out for the TIAs (Transient Ischemic Attacks; as I mentioned, they dress up as strokes), sleeping longer, and “sun-downing”; when she’d just go a little nutty pacing hallways and lifting wall hangings from their bottom ends to see what was underneath or try removing them entirely from the wall – all accompanied with helpless fear.  At the setting of the sun. 

Creepy, right?

This Rally is also known commonly as  “The Final Rally.” 

Think of phrases like the Last Hurrah, The Final Lap or for Entertainment Industry folks: Last Looks.
It’s a warning bell. Then end is near. And here we go. Runners find your marks.

Friend, it’s an awful thing to know a monumental end is imminent and “awfuller” to be able to do absolutely. Nothing. About it. 

Another TIA. Was it days? A week? Certainly no longer. The frequency was undeniably increasing.

Now those “bounce backs” would be a matter of perspective: 

“Do you know me? Mom? Do you know me?” Mom sat in a wheelchair. An oxygen tank beside her. (Mom on oxygen? MY mom?) A moment passes as she stares at my brother with a look of anxious wonder on her face… then she nods vigorously in affirmation and reaches up to his neck to pull him down to her face for a close hug and kiss. Hold me. Let me hold you, Son. She knew him.

As weeks passed, Mom, who was always an affectionate mother, became even more so. I suppose that as her thoughts became jumbled and her words would not come out right the best and most reliable next choice was the comfort of closeness. There are very few videos without her in close proximity to one of us. 

We continued to FaceTime. She’d fall asleep as we spoke. But now just to be able to see her alive even on camera was a blessing.
Another week. A few more days. News: she’s not eating. She’s not drinking. This is it. This is the end.
At this point the bathroom floor and I have nightly rendezvous. Along with the necessary “cry towel” I call it. Tissue can’t hack the weight. Because what can I do? What can any of us do? Wait. Pray. Cry. Endure and ultimately suffer through it. 
I kept saying to myself she’s the one suffering. I’m not suffering the way she is. I didn’t do this to diminish the reality of my own suffering or the suffering of my family. But was just trying to maintain perspective.
We begin the new year. She’s still here. Still! She never did like to be controlled. But even so by early January, everyone in the know can see plainly we all need to be there. And I need to fly home. But my brain is in the “off” position because I had my “last” trip. Graciously, my husband begins to think for me.
“Go home.” 
He doesn’t complicate things.
Oh. Right. I can do that. I can go home. I can be with my family. I can change the “plans.” I can make the story end differently. Thanksgiving would not be my last time to see her. 
I can say all the things. I can hold and kiss her again. I can say I love you and goodbye…for now. I would also get to see if I am a woman of courage; if I am capable of watching my grandmother, the woman who raised me, die.
So I went home. I have said this in previous posts but it bears repeating that it is wildly helpful to have two brothers who are both pilots.
From this point on I’ll break it down into days. Because that would be what we had left from the moment I hit southern soil again.
Tuesday. Mom had not eaten since the Friday before. Day 4 of a self imposed fast. (Day 4? I can barely get to 11am without a chocolate kick.) So we were advised there wasn’t much time; that most do not survive but a few days or at most, and unlikely, a week, without food and water.
Straight to the Home from the airport. Mom looks completely different from the plump strong woman I know her to be. She has lost what seems like half of her body weight. Her face and cheeks are sunken in because she had altogether given up on wearing her teeth. Her gums had shrunk, (Yep. That’s a thing.), and they hurt her. 
One should understand here that this is something my Southern Matriarch über Mother would NEVER (in her right mind) EVER give up. But there they were, sitting in a crappy plastic cup of water. The same one you see in the movies. Floating teeth. Truly, the mother I knew would be mortified to know she did this. I sit here waiting for the lightning to strike me for outing her this way. So for her sake please forget this part of the story.

This toothlessness made her look at the very least 10 years older. Mom was 86. And she looked really good for her age. But now… and her hair was silvery. She had dyed her hair chestnut up until the day she moved into the home 6 months prior. (Only 6 months?) Now all gray.

Who was this woman lying comatose, breathing heavily, mouth slack-jawed open… limp and completely unawares of the family that surrounded her? I held her hand. She did not grasp back. But it was so warm. Hot, in fact.


My family who had been there all along, the Front-Liners, had a very different way about them in the room.  It was…casual. At times irreverent. And it upset me. But I had not been there.

This was their daily life now and had been for 6 months… more if you count the years leading up to the move. But where was the peace? Where was any sense of holiness? 

It was buried beneath an undercurrent of a great mound of long time age old… and festering… stress and resentment. 

That would account for it.

I understood. But it still made me sick. I had to keep my mouth shut out of respect for those who’d been the daily care-givers for years even before she’d gone into the home. (You’ll want to pause here and ask “what exactly do we mean by ‘keeping our mouth shut?’”)
As I held my tongue (on day one) I kept asking myself where was the respect for the dying
Respect was hiking his way through the Valley of the Showdown of Comeuppance.




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