THE PALACE OF JOY

So, it turns out, the Palace of Joy is a suburban house - three bedrooms, two baths, living room and kitchen. Two single beds in each room.

It’s the last place Jurate will move into that she is aware of. The move was made this afternoon.

I don’t know if I have mentioned her decline before, but it seemed she would decline a bit, then “plateau” for some varying period of time, then drop noticeably, coming back up a bit and then plateauing at that point till the next time. Long and slot, but if you graphed it, the line was definitely down.

Then, right after Thanksgiving, she began a decline - not steep, not alarming - but there has been no “plateau”. It’s been obvious where things were headed.

Her sister came down Monday, for the first time since the week before Christmas. She was alarmed by what she saw. I wasn’t quite as alarmed, since I’d been there to see it minute by minute, but I wasn’t surprised by her reaction; I had stepped out on the porch and explained things to her before she came in.

We called the hospice, and the attending physician came over. He agreed with us.

Yesterday he came back. He told us his recommendation was that she move to “residential care.” The hospice staff will be involved.

“Residential care.” “The Palace of Joy.” The names we give such places, the attitude we put on what is happening there.

I guess “Palace of Joy” beats “House of Death” without any real competition.

But that’s what’s happening.

I sort of had it in my mind that she would be here till the end, that it would just be that one morning, like Monday before last, I would walk into her room in the morning and see her in a strange position and not see her breathing, and she’d have departed during the night.

Except when I saw that Monday before last and thought for several long minutes that the day I had been expecting and dreading had finally arrived, when I touched her shoulder she opened her eye.

She was actually pretty close. When I checked her oxygen level and heart rate, they were both half of normal, and her blood pressure was in the high 80s.

With a lot of effort through the morning with one of the hospice nurses, things returned to the low range of normal.

That’s where they’ve been for the past week. The low range of normal.

When the attending physician said that, Jurate was aware, and so the choice was hers. As has been the case too many times over 27 years, her first choice was to say she would think about it.

This morning, her sister asked her what she wanted to do. I was standing there listening.

She said clearly she wanted to go to the other place. To not stay here. To not stay here with me.

But then she looked at me and said “You need a break.” She hasn’t been speaking clearly for the past six weeks, but that was clear as a bell.

So it wasn’t a decision to not stay here with me. It was the kind of decision she’s also been known for: deciding to do something so she’s “not a bother”. It’s something she learned growing up in her version of what I grew up in, the opposite of how I did it.

And then once she said that and the phone call was made, everything moved fast. It was over in two hours.

So now I find, after a lifetime of not believing in religion, that the Catholics were right - Purgatory exists.

She’s gone and yet she isn’t. I’m here with all her stuff.

Thank god her sister said she’ll come back down next week and we can go through what’s here and separate “the wheat from the chaff.”

She’s gone and yet she isn’t. And at some time in what I think is more likely the near-distant future, there’s going to be a phone call one morning.

And I’ll learn that the cage door opened and the bird flew free.

I simultaneously don’t like the situation and am breathing big sighs of relief.

I don’t have to watch the artist no longer able to use her hands, that are balled up and useless.

I don’t have to hear the mystery fan who could usually figure out the English mysteries we watched on PBS from the clues provided, now ask me to explain the story she’d just watched.

The cats are all asleep on her empty bed. The medical equipment supply people have been called and they’ll be by sometime between 10am and 6pm tomorrow to pick up the bed and the oxygen machine and the wheel chair she couldn’t use for the past two years.

I’ll finally be able to put the stationary bike she last used in 2019 on Freecycle for someone else to put to use. I couldn’t take it out in front of her, a final sign she was never getting out of that bed.

She did get out of the bed. The ambulance attendants wheeled the gurney in, and I moved her to get the blanket under her, and they lifted her out of the bed and into the gurney.

And then they wheeled her out the door. Down the walk to the ambulance out front.

Some kids from up the block were out with their dog since it was the first day in a week it wasn’t raining, and they stopped and watched.

And then they drove off up the street and disappeared around the corner.

The Palace of Joy is about a 10 minute drive from here.

I’ll be making that drive. How many times I don’t know. But I’ll make it till the phone rings that morning to come.

I didn’t think I was going to write about this, but after an evening realizing how well I learned the survival skill of not crying, this is the next best thing.

Thank you all for being here. The photos are from the last fun thing we got to do, before she got the Parkinson’s diagnosis.

To avoid the circling trolls, comments are only for paid subscribers.