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When Your Bags Are Packed

Updated: Mar 16


IT STARTED SLOWLY.

Both the curious behavior and my ability to accept the reality of what was happening.

First, there was the packing.

Shopping bags lined the walls of my mother’s bedroom, neatly stuffed with clothing, bedsheets, towels.

“Mom, what’s with all the shopping bags?”

“I’m cleaning out my bureau drawers.”

Hmm.

Soon, there was obsessive change-counting.

“Mom, how many times are you going to count those pennies?”

“These are different pennies.”

Okay.

Next, the odd holiday decorations.

“Mom, it’s Christmas. Why do you have Halloween decorations mixed in?

“They do it that way now.”

They do?

Then, the full-on dead-person hallucination.

“You know, I see your grandmother.”

“Really? Where do you see her?”

“She’s sitting in her usual place on the sofa, reading the newspaper.”

“Well, does she say anything to you?”

“No.”

“Do you say anything to her?”

“Oh, no, no.”

“Mom, uh, you know what? Don’t tell anyone else that you’re seeing grandmom, okay? Because they’ll think you’re off your rocker.

With a hearty laugh she answered: “I’m just telling you! I wouldn’t tell anyone else.”

And silly me thought, well, what do I know? Maybe she is seeing grandmom.

SOMETIMES YOU NEED a brick wall to crush you before you understand that the house has been collapsing.

All the bricks fell down the day I went to check on mom during my lunch hour and quickly found out crazy town had a whole new zip code.

I put my key in the front door and as I pushed forward, there was resistance. Convinced my mother was dead on the other side of the door, my heart started racing.

I kept pushing and finally broke through.

The good news? Mom wasn't dead.

The bad news? She was sitting in the middle of the living room, looking like the Madwoman of Chaillot, surrounded by what appeared to be everything she owned stacked in large piles around the room.

Dresses still on hangers, suitcases, silverware, appliances, on and on. She clearly had spent the night bundling up the entire house. All packed and ready to go.

“Mom! What are you doing?”

“I’m going home.”

“What? You are home!”

“No I’m not. They told me I have to leave.”

“Who? Who told you?”

“The men.”

“What men?

“The men. They told me I have to leave.”

“Mom, listen to me. You are home. You don’t have to leave.”

“I don’t have to leave?”

“No! You can stay here.”

“I can stay here? Oh, thank you.”

SO, YEAH, THIS WAS THE PART where I finally had to take off the blindfold.

My mother wasn’t having a senior moment. It wasn’t an age-related memory problem or simple bizarre old-folks behavior.

It was Alzheimer’s Disease. And my mother was only 74 years old.

Twenty-six years later, we’re still looking for that big pharma breakthrough. The wonder drug that will stop the brain neuron death march.

There have been some minor successes, but they are far from encouraging. In fact, the drugs can be even scarier than the disease.

Like this week’s announcement by Eisai and Biogen that a clinical trial of their experimental drug lecanemab showed “moderately less decline” in cognition among early-stage patients.

However, lecanemab also caused brain swelling and brain bleeding in some of the trial participants. Yikes!

Clearly, we are still years, perhaps many years, from having anything close to a “cure.”

So, here I sit, no longer 45 years old, but now age 71. Which, in itself, is hard to believe. Where's that blindfold?

I don’t think I’m going to lose my mind in another three years, but who the hell knows?

If I do, just make sure somebody tunes in Bonnie Raitt Radio on Pandora and hands me a glass of Pino Grigio to pleasantly pass the time.

And if I start packing, well, just try to point me in the right direction.




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My husband, now 82, was diagnosed about 17 years ago. Traveling this road with him is like driving in the fog with no roadmap and no idea what your destination is. He has been stable up until recently, but statistics show the decline after 7 years is accelerated. We may as well pray for a magic potion for the amount of progress we've seen in the science field. We also need to push advocacy to create a comprehensive roadmap for caregivers and need it soon. Thank you for your personal story. It goes a long way in humanizing AD and giving us a wake-up call to the signs of this disease in our loved ones.

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Rosemary Parrillo
Rosemary Parrillo
07 de dez. de 2022
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Sadly, many people have a similar story. Like yourself, they know the devastaging pain of seeing a loved one disintegrate before your eyes. I am so sorry that you have lived with this for so long and that this painful journey continues. I'm not a scientist so I don't know why effective treatment has been so elusive. Let's hope eventually there will be a breakthrough in our lifetime. Good luck and thank you for sharing your story.

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